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In 2021, we had the privilege of welcoming Penelope and her family into our community. Since then, we’ve been able to share some of her progress in physical therapy, and celebrate each milestone along the way.
Her father, Anthony, has always been a fierce advocate for Penelope, and will stop at nothing to make sure her needs are met. One need that the family has struggled with in recent years is after-school care. Anthony told us, “For our family, this has been a major challenge and has actually negatively impacted my employment over the last two years. Fortunately, my newest employer is incredibly flexible and allows me to work from home in a pinch when Penelope's caregiver is not available.”
Although Anthony has since found a more flexible employer, he knows that there are so many other families who don’t have that option. That’s why this week, Anthony wanted to take things a few steps further.
As part of his mission to spread awareness for the lack of after-school care programs for children with disabilities in Long Island, Anthony walked 100 miles dressed head-to-toe in his firefighter gear. He invited anyone interested to join him in his walk and even drafted a petition to send to public officials requesting recognition and resources for children with special needs. In an article from News12 Long Island, Anthony stated, “If this is what it takes to get the services for her, I'll walk 1,000 miles if that's what I needed to do.”
Unfortunately, in the midst of his 100-mile walk, Anthony was confronted with another critical issue. Recently, Penelope was approved for support through CDPAP (Consumer Directed Personal Assistance Program). This state Medicaid program has made it possible for Penelope’s family to pay for an after-school caregiver.
Anthony told us, “The governor of New York State has taken aim at an integral part of CDPAP in which they are looking to eliminate Designated Representatives. For Penelope, I serve as her Designated Representative. The Designated Representative takes care of the recruitment, hiring, and other administrative duties for individuals who physically cannot do these things. By eliminating designated representatives, over 100,000 people will instantly lose eligibility, including but not limited to children, individuals with dementia, and people who are non-verbal.”
This is exactly the type of obstacle that Anthony is hoping to spread awareness of. Even more so, he hopes to bring enough attention to these issues that it makes a lasting impact for families just like his, facing many of the same adversities. To Anthony, this calls for significant policy changes.
“I knew completing the walk would be the initial and easiest step because the real challenge would be convincing elected officials with the resources and influence to create these much-needed programs. However, upon reaching the hilltop and completing the walk, I didn't realize I would be faced with Mount Everest. It has already been extremely difficult living in a world without appropriate after-school program for children with disabilities, like Penelope. However, now the governor of New York in her Executive Budget is looking to eliminate access to one of the few programs available to help us pay for her after-school care.”
Anthony’s 100-mile walk may be over, but his fight to advocate for children with disabilities is not.
Anthony, on behalf of all of us here at CC, we deeply admire and commend your incredible advocacy work. Thank you for being such a strong voice for Penelope and for everyone with a rare medical condition who has to fight to get their needs met every day.
For those interested in signing Anthony’s petition, we would encourage you to sign here.
Read the original story HERE.
About this time last year, we welcome Eliana and her family into the community. Now, a year later, Eliana's mom, Tiffany, reached out to share some updates!
Tiffany wrote, "Getting the van from CHIVE has been life altering for our family! I don’t even know where to start… Eliana started Pre-K in August!! We began the power wheelchair process in December of 2022. Insurance denied the first chair we chose… denial… appeal… denial again…. Another appeal… still denied. We then tried for a different chair and it was approved! We received the power chair at the in of July - just in time for pre-K! Around this same time… I applied for a grant for a manual wheelchair from Wheelchairs 4 Kids and we received a manual chair that was for us - I would be able to get adjustments and repairs done locally and we’d have a chair that would fit in my mom or oldest daughter’s car when they would take Eliana to therapy appointments.
The ease of having Eliana roll in and out of the van every day for school is such a gift!! She hasn’t taken the power chair to school for a full day yet. We are getting her use to power… running into something or someone makes me a little hesitant.
Recently, my niece had a birthday party outside with a water slide and huge piece of property. This was the first time Eliana was in her power chair. She had zero limits in the grass (something that isn’t possible in a manual chair) and it was amazing to see! During a family kick ball game… Eliana was just zooming back and forth through the grass. She had the biggest smile on her face. I seen my daughter run for the first time… even though she was in a wheelchair… Dorsy she was running!! This day and this moment that my entire family witnessed would not have been possible without Chive’s gift!! I would not have been able to transport this 300 pound machine without a modified van.
Something that is always important to me is making sure Eliana has zero limits… that most of the things we participate in is accessible in such an inaccessible world… this gift has made that goal possible for our family!! I am so appreciative to the entire Chive team and their donors!"
Thank you Tiffany & Eliana for giving us the opportunity to support you all, and thank you to our community for giving us the support we need to get them the van of their dreams!
Read the original story HERE.
It was only 3 years ago that we met Kaylan and supported her with 16 weeks of Physical Therapy. Since then, she has made significant strides. Her mom reached out to us this month to share some exciting updates!
She wrote, "It’s been 3 years since Kaylan received the wonderful gift from Chive Charities. With that gift Kaylan was able attend NextStep Orlando Paralysis Recovery Center for 16 weeks. In that time Kaylan gained significant strength in her trunk area to be able to hold herself upright without assistance and in her legs where she was able to improve her ability to walk with some assistance. Since then Kaylan has continued to work hard. She has not for a minute given up her fight to become independent once again. She has been able to attend NextStep on a couple more occasions where she continues to get better and better at walking. Each year NextStep holds an annual Red Carpet event so clients can show what they have gained. Each Red Carpet event Kaylan has been able to do more and more. Last year she was able to walk the red carpet with minimal assistance from her trainer. No need for a special walker that supported her weight. She was able to carry her own weight and was able to move her legs forward by herself.
During these last 3 years Kaylan graduated high school and is now attending a local community college studying film production as she aspires to be in that industry in some capacity. Today she continues to work just as hard with equipment at home, local gym and continues to raise money to go back to NextStep where she has made lifelong friends with trainers and other folks that share the same drive and goals.
It is clear if it wasn’t for the generous donations from Chive Charities Kaylan would not be where she is today, a beautiful smart young lady with a bright future ahead of her."
It sounds like Kaylan is only getting started, and we can't wait to see where life takes her next.
Congratulations, Kaylan!
Read the original story HERE.
You may remember Rozlyn from our March 2019 flash charity campaign. Back then, Roz was only 8 years old. Tomorrow, Roz will be 13, and we can’t believe how quickly time flies!With such a significant milestone around the corner, Roz’s mom reached out to us and shared the following update:
“I just wanted to drop in and give a little update on Roz. Roz was the recipient of a 2019 campaign. She has an extremely rare form of encephalitis that essentially led to heaving half her brain detached at age 3.5 years to stop the seizures. She remained seizure free for almost 8 years but unfortunately 2 years ago the seizures returned. So now, at the age of 13 ( her birthday is this Saturday) she will be having 1 possibly 2 more surgeries this Summer to remove remaining brain lobes on the affected side. Hopefully, she will be seizure free once again. No specific dates set yet. Her case will be discussed by the epilepsy board at Cincinnati Children's on June 22nd. Please keep her and our family in your thoughts and prayers. We will keep you updated. You can also follow her story Journey of the Amazing Roz.”
On behalf of the entire Chive Charities team, we would like to wish Roz a very happy 13th birthday! You continue to inspire resilience in us all, and it is our privilege to have you as a part of our community!
Read the original story HERE.
After almost 16 years of battling with Snyder-Robinson Syndrome, it is with heavy hearts that we announce the passing of our dear friend, Joey.
Joey was such a bright light, and his legacy will continue to inspire resilience and strength throughout our entire community.
Nathen, Joey's father, shared the following message:
"To the wonderful Chive Nation, I wanted to thank you again for your generosity and give you an update. In February 2019, you were able to get my family a wheelchair-accessible van to make it easier to transport Joey and Greggy to doctors appointments, trips to Indy where their specialists are and to just transport the family around. Two weeks ago, Joey was admitted to Riley’s children's hospital in Indy with pneumonia. During the two weeks, he fought to recover, and the wonderful doctor and nurses at Riley’s did everything they could so he could come home. Yesterday my family was informed that there was nothing more that could be done for Joey, his right lung had been damaged too extensively, and they didn’t know if he would survive the surgery. In the early afternoon of May 12, 2023 my nephew passed away at 15, in another month and a half he would have been 16. This Friday, we will be celebrating his life and saying goodbye. My little buddy is no longer in pain but his life is as short as was impacted by so many."
Our thoughts are with the Woodruff family during this difficult time.
Read the original story HERE.
It is with heavy hearts that we share the passing of our friend Alyson O. Alyson passed away on 4/20/2023, after a lifelong battle with Juvenile Huntington's Disease.
Alyson's father, Chris, shared that Alyson's body was donated to help save the lives of others. He wrote, "Alyson loved to give, and that is the best gift of all."
What a beautiful, and fitting, legacy she is leaving behind.
Alyson, you will be so, so missed. May you rest in peace. (2004-2023)
Read the original story HERE.
In 2020, we partnered with the High Fives Foundation to purchase a UTV for Ira E. Ira explained that he wanted to use it to help other Alaskans with disabilities and give them the opportunity to hunt and enjoy nature.
Since then, Ira has taken several of his friends and peers on his UTV to go sightseeing, camping, and hunting around Alaska. Ira told us, "I’ve taken my friend with cerebral palsy out 2yrs ago to get her first caribou ever. Last year we got her first moose. This year I’m taking her and my buddy's uncle, who has a degenerative nerve disease."
Ira isn't stopping there, either. He shared with us that he is partnering with Big Agnes to develop a hunting program for people with disabilities. As a long-time advocate for people with disabilities, Ira is the perfect person to work on this project.
Ira told us that Alaska is the only state that does not provide hunting opportunities for those with physical disabilities. Thanks to Ira's long-time advocacy work, he was able to get the first-ever hunt for people with disabilities in Alaska passed!
Congratulations Ira, you are such an inspiration!
Read the original story HERE.
Last year, we had the privilege of working with Retrieving Freedom (RFI), an incredible service dog organization located in Iowa and Missouri. This sweet pup, lovingly named Chiver, is the culmination of that work. Since last year, Chiver has grown from a small puppy to a service dog in training, and RFI is optimistic for his success.
RFI Program Coordinator, Ashlyn, wrote "Chiver recently transitioned from Stage I training to Stage II! Chiver is a big, sweet boy with a phenomenal love for his training. He is always happy to be with his handler and performing cues. Chiver completed Stage I with a fantastic understanding of his obedience skills. He picks up new skills so incredibly quickly that he was able to begin learning the foundations of many tasks prior to Stage II – such as settle, pivoting into positions, front and back foot targeting for brace, and chin targeting.Chiver entered into one of our Stage II Prison Programs at Central Mississippi Correctional Facility where he will work with an inmate to further advance his obedience skills and learn Service Dog tasks that may one day help a disabled Veteran or a child with autism. In the meantime, Chiver is additionally working through a little reactivity, primarily towards other dogs and particularly strange sights or people, but shows a nice ability to work through it. We are excited for his future!"
We are excited too, Ashlyn!
We look forward to sharing Chiver's progress throughout the remainder of his training. Stay tuned for more updates soon!
Read the original story HERE.
A few months ago, we introduced you to James C., an adorable 1-year-old who is visually impaired.
All James wanted to do was play outside in his backyard. Unfortunately, he did not have a backyard fence to ensure his safety from the busy streets surrounding his home.
...Until now!
Thanks to your generous donations, James and his best feline friend, Max, can celebrate the first day of Spring in the comfort of their own backyard. Their new fence looks great, and has opened up a whole new world of freedom and independence for James -- while keeping him safe to explore.
We just know that this is only the first of many backyard adventures, and we can't wait for the adventures that await!
Read the original story HERE.
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Read the original story HERE.
It is with heavy hearts that we announce the passing of our dear friend, Kweli.
Kweli entered the Chive Charities family just a few short months ago, but he was immediately embraced into our community thanks to his light and his resilience.
Kweli, we are grateful to have had the privilege to share your story with our community. Your legacy will live on in the hearts of us all.
May you Rest In Peace.
Read the original story HERE.
It is with heavy hearts that we announce the passing of our dear friend, Jay Kaufman.
Jay's friend, Joe, reached out to us to share the devastating news. He told us, "You all made his last year awesome. He was mobile, he was able to do what he wanted, and that is all because of you all."
Jay, it was a true privilege to have been a part of your journey. May you rest in peace.
Read the original story HERE.
In her most recent therapy session, Penelope was able to walk on the treadmilll for five whole minutes with limited support and bungee-free!
This is an incredible accomplishment for Penelope, and it is amazing to see how far she has come in the last two years.
We are so proud of you, Penelope, and we can’t wait to see what you achieve next!
Read the original story HERE.
Brian’s life changed for the better when he got his service dog, Oreo. When he’s sleeping and issues arise, Oreo wakes him and comforts him. When he needs to run errands or go to the store, he’s able to stay in public for more than 10-15 minutes at a time. When he’s driving in the car and his heart starts to race, he reaches over and pets Oreo, reminding himself that it was in the past and he’s in the present now.
Brian sent us an amazing update of him taking a beautiful, three-mile hike – something Brian would not be able to do without his service dog, Oreo. Thanks to our donors, Brian is able to have a better quality of life with Oreo by his side.
"Thank you to everyone at Chive Charities for helping me get my service dog. We just completed this three-mile hike to Hidden Lake overlook and I wouldn't have made it here without all your help. Thanks again." - Brian E.
Read the original story HERE.
For Melissa, those aren’t just words. She does everything she can to give Nathan a good life, despite all they’ve been handed. It hasn’t been an easy road.
Donors like you answered our call for help. Because of you, we were able to call Melissa and Nathan and say, “Don’t worry about the van. You’re getting the help you need.” Thanks to our friends and partners at AMS Vans, a new 2019 Dodge Grand Caravan wheelchair-accessible van was delivered to their home.
As you can see from the photos above, the real impact was so much more. Because of you, Nathan was able to have the experience of a vacation comfortably with reliable transportation.
Read the original story HERE.
From the entire team at Chive Charities, we are rooting for you, Lane! Keep taking on all the obstacles in your way better than a professional bull rider. Now with your new chair, you are impossible to buck off.
A quote from Lane’s dad, Tim. “Well, the day has finally arrived…. Lane has received his track chair and we cannot begin to express how happy we are! We also can’t believe how quickly he has taken to using it in less than a few hours of having it! We cannot thank Chive Charities enough for helping us get this amazing chair. Lane now has his own off-road “legs” and can go anywhere and do anything. No more being held back by wheels that get stuck and have to stay on hard surfaces. Lane has already begun putting the chair through its paces and is already a pro at it! We cannot wait until wintertime when it finally cools down and we can use it even more!”
Thank you to our incredible community of donors for stepping in and helping Lane. Together, with your dollars, we were able to give Lane some independence as he keeps riding!
Read the original story HERE.
It has been about a year since she received the Chive Charities grant and in the last year, Penelope has continued to make improvements and has gotten stronger and more confident.
Last week in her therapy session, she did 25 minutes on the treadmill (with all the pulleys and straps that they use as part of her therapy). Also, over the last couple of weeks, the family has noticed Penelope is bending her knees a lot more while walking assisted, which is showing her confidence and strength. At school, her teachers and therapists are making her walk using a gait belt instead of utilizing her stroller.
We are so proud of you, Penelope! We can’t wait to see what you achieve next.
Read the original story HERE.
It is with heavy hearts that we announce the passing of our dear friend, Isaac, after a brave battle with two rare medical conditions - Polymicrogyria (PMG) and Kabuki Syndrome.
Isaac entered the Chive Charities family in September of last year. An excerpt from his obituary really hit home for our team who had the privilege of working directly with his family: “Of the 3,810 days Isaac was here on Earth, the Archibalds shared Isaac with everyone, forming a community of people who somehow felt connected to a boy who could draw people in with his pure joy, love, and laughter. Isaac taught everyone how to love differently, how to find happiness in the little moments, and more importantly, that we should treat every day of life as a gift.”
Isaac, we are grateful to have been part of your community. May you rest in peace.
Read the original story HERE.
"Desmond has been doing so well, getting stronger and longer spans between each hospital stay. Today he started his 1st day at public preschool now that he has aged out of early intervention. Not only has the ADA van helped with all the doctor appointments, therapies, and community activities, but it is also his way of getting to and from school until he has a nurse to take the bus with him. I wanted to thank you and the Chive community for changing our lives!"
Desmond is thriving thanks to our amazing community. Thank you to all of our donors for making an impact on Desmond's life.
Read the original story HERE.
It is with heavy hearts that we announce the passing of our dear friend, Kaitlyn, after a brave battle with a rare form of epilepsy called SCN8A.
The Delgado family told us, “She lived a full life despite her limitations and was a happy little girl with a big personality.”
Katilyn, you were a wonderful soul who touched the lives of those all around you. May you rest in peace.
Read the original story HERE.
Now, at three years old, Lucy is starting PreK while Luna, her service dog, is flying through her training program.
By the grace of an angel donor, Lucy will be protected by an incredible dog who is trained to detect seizures before they happen. “For this little girl’s life, the impact a dog can have will be huge.”
Read the original story HERE.
The once-active teenager experienced a growth spurt 4 years ago that changed everything. Liam’s feet grew so quickly that his Achilles tendon couldn’t keep up, pulling on his heel growth plate and pinching a nerve. Annoying heel pain quickly turned into extreme sensitivity in his entire foot. Within days, Liam went from being able to wear a shoe to no tolerance for socks, then no touch, and then no air. It’s now to the point that the slightest wind or a single drop of water on his foot leads to pain so intense, it’s unfathomable. At 11 years old, Liam was diagnosed with CRPS (Chronic Regional Pain Syndrome).
CRPS, known as the “suicide disease”, sits at the top of the pain scale, above ailments like kidney stones and amputation.
With Liam in constant pain and isolating himself in his room for weeks at a time, even away from his siblings, in fear of the inevitable bouts of CRPS. Seeing their son suffer is a form of torture for any parent. Not surprisingly, Liam’s parents were desperate to ease his pain and couldn’t rest until they found one. Their research paid off when they found Spero Clinic, the world’s leading clinic for treating CRPS with an 84% remission rate.
There was one problem though, insurance doesn’t cover the treatments. The price tag to give Liam his life back and bring a smile back to his face? Only $33,000. Despite the hefty price tag, the Dodds were determined to do whatever was necessary to take away Liam’s pain.
So last December, the Dodd’s reached out to Chive Charities and we were happy to approve 30 rounds of state-of-the-art CRPS treatment at the Spero Clinic, thanks to our small army of committed monthly donors.
Yesterday, Chive Charities' amazingly talented Director of Content and storytelling master, Brittany Myers, wrote Liam’s story in a way that would put a lump in even the Grinch’s throat. What no one else knew was that there was a wrinkle in the story and we were in dire straits with funding Liam’s grant.
I added the following Hail Mary note to the end of Liam’s story.
Almost immediately, the community responded with the most positive comments and hundreds of donors answered the call. Within hours, Liam’s extra sessions were covered completely.
But that’s not even the coolest part. All those positive vibes worked! Liam’s mom reached out after we told her our community stepped up for him. "Oh my God! Thank you so much for blessing our family! We read the story together and Liam is reading all the comments. I'm still crying. I'm a mess. Thank you so much. Liam is being seen at the clinic this week and he's responding so well to the treatment already!”
Just yesterday, Liam was able to shift his weight and take his first steps in a very long time!
For the first time in 4 years, Liam was physically able to dine in at his favorite restaurant. While it may not seem like much, the return of any semblance of normalcy means the world to him.
And then there is the return of Liam’s smile. Perhaps he finally sees a light at the end of a previously-endless tunnel. Perhaps it’s the support he now feels from the most generous community out there. We don’t know what the future holds for Liam but if his smile and his determination is any indication, it’s a bright one. One thing is certain though. We’ll be with him and updating you on his progress every step of the way.
Thank you to everyone who contributed in honor of Liam and the recipients whose lives are yet to be impacted. You are the ones easing the pain of the underdogs with nowhere else to turn. You are directly responsible for bringing smiles to faces that haven’t had reason to smile in years. Bring on the next smile by donating RIGHT HERE.
Read the original story HERE.
When we last checked in on Jack Sawyer, Brian Mercedes and I were in a trailer park in southern Indianapolis. The Greenfield Estates, which we nicknamed ‘doomsday trailer park’, was about to be the permanent home of the Sawyer family. They needed a one story house (or in this case a single-wide) to accommodate Jack’s many ADA needs.
Chris and Fay were currently living with Chris’s parents in their two bedroom home. With Jack now over 100 lbs., the Sawyer’s had purchased a stretcher on Amazon to carry Jack to the upstairs bathroom, where the lone bathtub in the home was located.
That is, until Chris strained his back leaving Fay to carry Jack up the stairs on her back (literally).
Jack’s condition was worsening by the day. His ACOX1 genetic mutation had left him deaf, without the ability to walk, and his skin blistering and shedding. His parents had run out of time, money, and options. When we met Chris and Fay, Chris told us the last shoe was about to drop. Fay quipped, “unless we find a ruby slipper.”
It was that moment I told them that the Chivers would like to raise $25,000 for Jack and with a $25,000 match from STRATACACHE. It wasn’t enough for a new house, but it would buy them some time to find a safe apartment, anything but the Greenfield Estate doomsday trailer park.
I think Joshua said it best, “This family has no idea what’s about to happen.”
The Shiny One was right. The Sawyer family watched the $25,000 goal smashed in under an hour. Then double… and finally $66,000!!!!
The Chivers and STRATACACHE raised so much money, the Sawyer family is now building a brand new home… to go with the brand new ADA-accessible minivan to park in their brand new driveway!!!!
Initially, the home they were building was to be carpeted. But an anonymous Chiver who read Jack’s story upgraded the home to wood floors so Jack could move freely about the house. How amazing and generous is that?!
All the doors are 3 feet wide so Jack’s wheelchair can fit through any doorway.
Jack will be able to sit up and take a shower in the spacious ADA-accessible bathroom! Even the light switches throughout the home are set at Jack’s height.
Fay wrote to Cory Hall-Martin at Chive Charities and said,
“This is a miracle. A miracle you all started with your kindness. If not for theChive and theChive Community and STRATACACHE…none of this would have been possible without all of your love, kindness, and generosity!!
In a few short months, Jack will have a home that has no restrictions for him. A home he could live in for the rest of his life!! All of you have given this to him, to us. Thank you doesn’t seem to be enough, but we do thank you from the bottom of our hearts for making this a reality!! Thank you for the ruby slippers…we’ve found our home sweet home.”
The Chivers continue to be a force for good in this crazy world. This is the 4th house we have built since the inception of Chive Charities. It gets better – Last month, we crossed 500 recipients and over $17M donated to the underdogs. We also set a new record of $500,000 donated to 47 recipients in a single quarter.
Thanks to all the Chivers who gave what they could to Jack. Your generosity took the weight of the world off two amazing parents. I truly believe you saved the life of a very deserving young boy with your swift action.
KCCO,
John
PS – Thanks so much to the Chive Charities Green Ribbon Fund donors. It was your leadership and generosity that purchased the new Dodge Grand Caravan to get Jack to his doctor’s appointments.
If you would like to know what it feels like to truly make the world 10% happier, I invite you to sign up to become a member. We have memberships ranging from bronze, gold, silver, and green. And if you want to see more of the impact those donations have on real lives, follow @chivecharities on Instagram, Facebook, and Twitter.
Happy Friday, Chivers, thank you for all this.
Read the original story HERE.
It is with heavy hearts that we share Luke's passing on Sunday, January 2nd, after a brave battle with Covid pneumonia.
The Prokay family told us, "Our hearts are broken but we know he’s in heaven, walking and talking and seizure-free. Thank you for being a part of Luke’s life and blessing him with a wheelchair van and beach wheelchair. And know that his beach wheelchair is now going to be given to a friend who loves going to the beach too. We want to share our blessing with him so he can live a full life like Luke did."
You can help Luke's legacy live on by donating HERE.
Read the original story HERE.
In James’s story, we talked about the unexpected trials he faced when first becoming ill a few years ago. James had a rare blood disorder called essential thrombocythemia, a condition that causes bone marrow to produce platelets beyond safe levels. His hematologist, a professional he trusted, confirmed that he was asymptomatic and didn’t proceed with treatment. That decision changed his life.
James would experience numerous life-threatening medical events as an effect, resulting in major surgery and a global ischemic stroke that nearly killed him, limiting movement on his right side and completely eliminating it on his left.
It was a long and difficult road, but with Karen and his girls by his side, eventually, James was well enough to be released into rehabilitation.
“After my discharge, my wife and daughters cared for me at home with the help of some terrific home health nurses and therapists.”
Chive Charities and our family of donors funded a new bathroom for James and Karen to help accommodate his new equipment, and his daughters, Emily and Caroline, lived with their parents and helped with his daily care. Life was different, but it was good.
When we heard about James and Karen’s daughters, we were immediately blown away by their care and compassion. For their dad, yes. But also for countless people they cared for during a time when frontline health workers were more exposed than ever before. Caroline is an operating room nurse and Emily worked as a pharmacist, both juggling demanding careers during a pandemic and still making time to put their family first.
Right before the holidays, the girls even teamed up to surprise James and Karen with a 30th-anniversary party. A family coming together once again to be there for each other.
It seemed like the worst was behind them. But tragically, unthinkably, the worst would happen on December 30, 2021.
Emily Grace FitzPatrick, James and Karen’s bright and compassionate daughter, died from injuries sustained in a car accident. She was just 27 years old.
While our Chive Charities team never had the pleasure of meeting Emily in person, we saw the impact her life had on her family and those lucky enough to know and love her. Messages of support and care flooded in from communities near and far.
“Emily was such a brilliant and beautiful young lady who will live in your hearts forever…”
“Emily was such a warm and caring girl…”
“Emily was an amazing, sweet, kindhearted woman…”
On and on, the messages expressed the same sentiment. Our hearts broke with James, Karen, and Caroline, and for everyone touched by her life.
But in true Emily fashion, she continued to impact lives just as she always had. James and Karen elected to dedicate donations to Chive Charities in Emily’s honor. We were humbled by the act, but not at all surprised to see the immediate reaction from her friends and family. Donations began arriving in her honor within minutes, more than $2200 and counting.
One, made by Emily’s grandmother, included a photo from her memorial alongside a beautiful and poignant poem.
The individual recipients who become part of the Chive Charities family often share their children, spouses, and other beloved family members with us. When we welcomed James FitzPatrick into our recipient family, we also welcomed Karen, Caroline, and Emily. Their family is now part of ours - their loss is now part of ours.
Emily didn’t just leave an impression, she left a legacy. And now, those donations made in her honor will be designated to future recipients who are waiting for their own life-changing aid. Even in her absence, she continues to impact the lives of others.
“Emily was such a brilliant and beautiful young lady who will live in your hearts forever…”
“Emily was such a warm and caring girl…”
“Emily was an amazing, sweet, kindhearted woman…”
She was. And she will continue to be.
From the Chive Charities family, our deepest and most sincere condolences to James, Karen, Caroline, and all who knew and loved Emily. May her legacy live on forever.
If you would like to make a donation to Chive Charities in memory of Emily, please click on this link and in the “Donation Dedication” box, type Emily FitzPatrick.
Read the original story HERE.
It is with heavy hearts that we share Lauren's passing on Friday, November 5th, after years of fighting Smith-Lemli-Opitz Syndrome.
Her mother, Rachel, told us, This makes our hearts feel a bit brighter that people are honoring Lauren’s memory with the Chive donations. Chive Charities will always be the ONE organization that made such a great difference in our lives."
You can help Lauren's legacy live on by donating HERE.
Read the original story HERE.
It is with heavy hearts that we share Gracie's passing on Thursday, October 28th, after years of fighting Prader-Willi Syndrome.
Her mother, Roxanne, said, "We cannot thank each and every one of you for your prayers, love, kindness, and support. Our baby girl touched so many people's lives in so very many ways."
You can learn more about Prader-Willi Syndrome, help spread awareness and help Gracie's legacy live on by visiting the Prader-Willi Syndrome Association HERE.
Read the original story HERE.
Henry Flores was born with no arms or legs. But don’t tell him what he can’t do. He’s one of the most determined children I’ve ever met. Without complaining, he figures out a way to accomplish everyday tasks most take for granted.
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It’s hard to believe it’s been over a year since we met Henry. At the time, the 4-year-old from Lees Summit, Missouri, was using his toy dump truck to roll himself up to the toilet. He would then use his face to prop himself on the toilet seat so he could go to the bathroom.
Where does Henry’s grit come from? Maybe it’s being 1 of 7 children, 2 others of whom are adopted, like Henry, by their incredible parents Rachel and Ray. It could come from the fact that none of his siblings treat him any differently. Or perhaps it’s because Henry doesn’t even realize he’s any different, himself. One thing is for certain. Henry is a very intelligent, social, and energetic young boy who is destined for greatness.
But like so many of the underdogs we meet at theCHIVE and Chive Charities, the cards were stacked against Henry from the beginning. So we did what we do and we set out to change that.
Henry had a new wheelchair sitting in the corner collecting dust for months because the different flooring and transitions in their home made it impossible for him to navigate. Rachel got so fed up during the height of quarantine last year, that she tore up the carpet to the subfloor so Henry could finally practice using the wheelchair.
Naturally, Chive Charities monthly donors stepped in with an $8,000 grant to install new hardwood flooring on the main level of their house.
What’s next?
Well we couldn’t have Henry using his face for leverage to climb the toilet anymore. When I talked to Henry on Zoom, he told me his biggest wish was to have a tiny sink and toilet so he could wash himself and become more independent.
We thought theCHIVE community would respond to the need and so we created a flash charity campaign for a custom bathroom renovation suited to Henry’s needs and set the goal at $10,000.
And the Chivers showed up, like they do, reaching the goal in mere minutes.
Henry’s reaction when we hit the goal says it all! He was getting his sink.
But that’s not all. Over 1,500 of you chipped in to 6X the goal and get Henry everything and more out of his new bathroom. $62,000 later Henry’s life was changed.
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Henry no longer needs the aid of a toy dump truck to go to the bathroom.
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A mini sink!!!! Be still my heart.
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I’ve always said that once we help a recipient, something unintentionally magical happens, usually far outside the original scope of the campaign. Well the magic is back with Henry…
For years, Henry has been using silicone liners on his legs to hobble around outside. Rachel’s dream was to have Henry fitted for prosthetics so he could learn to walk but there’s one huge roadblock – the cost. Even with insurance, the cost of a pair of prosthetics is $25,000. Not only that, but due to how rapidly Henry is growing, he’d have to be fitted for new prosthetics 4 times a year. I’m no mathematician, but that comes out to about the cost of one Bentley a year.
The cool thing about theCHIVE megaphone is that we use it to raise awareness for the cause via the individual. And you can’t help but fall in love with the individuals while learning about the cause. And these individuals inspire us all to go above and beyond.
Aaron Holm, from Wiggle Your Toes, read Henry’s story and shared it with his friend Jordan Thomas, founder of the Jordan Thomas Foundation (JTF), a nonprofit that helps kids get the prostheses they need to lead healthy and active lives. Shortly after Rachel applied with JTF, they were accepted!
Leading to one of the coolest moments of the year…
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Ladies and gentlemen, Henry’s first steps!
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What’s even more amazing is the fact that JTF will now cover all of Henry’s prosthetic needs until he’s 18! That’s a lot of Bentleys!
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If this doesn’t fill your heart with joy, nothing will. What began as a project to provide a child without legs a basic human need, has resulted in Henry taking his first steps.
That is the power of theCHIVE Community on full display. And that is almost the end of my update.
The snowball of goodwill continues next week with the Green Gala. It the only charity gala in the world that doesn’t raise any money that night for charity at all. Unlike other communities we spend 364 days a year consistently giving to others. And one magic night celebrating it. And we’d like you to join us next year.
For Henry, it all started with a few committed donors who lead the way by giving monthly to Chive Charities, allowing us to extend that hand to the underdogs. We do it every week and use our megaphone to bring you their inspiring stories. Will you reach out a hand to our next inspiring underdog by donating as little as $5 monthly right HERE?
Thanks to all the Chivers who gave what they could to help Henry. This was a very personal story for me and the Chivers always deliver.
KCCO,
John
Read the original story HERE.
Cole Garland was born with a rare genetic skin disorder called Epidermolysis Bullosa (EB), and his is an extremely severe subtype that has caused the layers of his skin to blister and fall off, along with webbing his hands and feet and diminishing his mobility. It is a life-limiting condition.
EB is so rare that the NICU where he was born was not equipped with the proper wound care supplies needed for babies with his type of skin, and they later had to be specially ordered by the hospital. To this day, Cole requires $3,000-$4,000 worth of wound care supplies each month. Each month.
On top of the monetary cost, Cole deals with excruciating pain and inflamed and itchy skin each and every day of his life. Three or four times a week, he endures 2-3 hours of dressing changes, a process that is both awkward and painful. It’s not the way it’s supposed to be for a teenage boy, and yet, it’s all Cole has ever known.
But, because he also happens to have two rockstar parents (we see you, Jennifer and Chris!), he’s had some typical teenage experiences, too. Namely, as many video games as he can play when he’s not putting his Mensa-level brain to work with school. He is a certified genius. He also deserves all the help he can get.
When Chive Charities met Cole, several obvious and immediate needs came to light. First was the substantial cost of the wound care items followed by a high-low adjustable bed, travel expenses for critical doctor appointments, and the icing on the cake...a new gaming PC with adaptive hardware. All in all, it totaled $14,000, which Chive Charities was able to cover in-full through the donations of our dedicated donor family (you can join it HERE).
Once those needs were met, we turned our attention to something even bigger - something we knew had the potential to be even more life-changing but would take the support of so many.
You see, Cole also needed a Safe Step Tub ($16,000) and an Air Hawk power wheelchair ($4,000) to make his life that much easier and in simple ways that we so often take for granted - like walking from one room to another or taking a soothing bath.
So, what does it mean at Chive Charities when something like this happens? Let’s pull back the curtain a bit.
When we meet a recipient with an even greater need than we can meet on our own, we look to the one community we know will do whatever it takes to help them. We look to you, Chive Nation. These are the huge campaigns that rally our community and pull us together to smash a goal, and they happen only once or twice a year at this level. Goal smashing is exactly what we hoped to do for Cole and his family.
As John Resig so eloquently stated: “Send it.”
After Cole’s initial story was shared and the Go Fund Me page linked, we watched in stunned silence as the $20,000 goal was completely obliterated less than an hour after the post went live.
Not even 48 hours after that, it had surpassed the $100,000 mark. Let’s rephrase that...you surpassed the $100k mark.
So yes, because of thousands of incredible donors, Cole is able to get the Safe Step Tub and power wheelchair he desperately needed, along with the extra funds to cover a bedroom remodel he deserves more than anything.
All money raised through the campaign - now at $112,000 and counting - will continue to support Cole and his care every single day moving forward, including the $3,000-$4,000 monthly wound care.
This is what Jennifer and Cole thought of that life-changing number:
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We hear this phrase all the time: “This is why I Chive.” Cole is one more example of what that really means, the incredible effect that can have. He is why we Chive.
Without the support of amazing donors, we wouldn’t be able to change lives like Cole’s. All of this is because of all of you. Become part of our Green Ribbon Fund and sign up as a monthly donor. Who knows how many lives you could change for the better. DONATE HERE.
Read the original story HERE.
He’s now five years old and as active as ever.
When we first met Henry and his amazing family - mom, Rachel, and dad, Ray, have 7 children in total, three of whom are adopted - they were simply looking for a resource for kids with limb differences. What they weren’t expecting was the life-changing impact of Chive Charities and our community and the difference it would have on their lives.
Initially, the Flores family requested new hardwood flooring on the main level of their house so that Henry could easily navigate the space in his wheelchair. He also needed new silicon liners, so our dedicated donor family stepped up to cover both needs.
The family also had a stretch goal of getting Henry a child-size bidet and bathroom renovation to help give him some independence and privacy, especially since his current workaround was to use his face and mouth to pull his body up onto the toilet seat. While his ingenuity and resourcefulness should be commended, that doesn’t mean it should be his only option.
Because of our committed donor family, a new option was on the way. The target was $10,000, and in typical fashion, theCHIVE community read Henry’s story, saw his need and the goal, and promptly smashed it within the first 24 hours.
To date, over $62,000 has been raised for the Flores family, helping them renovate their bathrooms with a mini sink, child-size bidet, and shower setup for Henry.
So how do you get around a bathroom with no hands or feet? Let Henry give you a tour of his new digs.
How cool is this shower with controls that Henry can now reach?
And the coolest part, check out Henry’s new toilet built right into the floor and touch sink. No more using his face to climb up onto the toilet!
But that’s not all, of course Henry wanted to show off his new hardwood floors while hamming it up like only Henry can do:
You can check out the whole video tour from Henry below.
It’s proof that you can never underestimate the power of your donations to Chive Charities. From contributions ranging from $5 and up, one boy’s life was changed for the better. And while Henry’s dream has been realized, it’s never too late to join us in making the world 10% happier for recipients just like him. Become a monthly donor and DONATE HERE.
Read the original story HERE.
Last August, we introduced you to this avid gamer with an affinity for graphic design who also happens to have Spinal Muscular Atrophy (SMA), type 2.
When his disease was diagnosed just after his first birthday, Zack’s family was shocked. They had no known history of the disease on either side of their families, and the gene that causes SMA is recessive, so both parents must have a copy of it in order for their child to have SMA. Looking back, the signs were there - weak muscle tone in Zack’s legs, delayed motor skills, regression in physical development. But an SMA diagnosis never even crossed their minds.
Fortunately, despite the uncertainty of his condition, Zack really hit the jackpot when it came to his family. The primary goal was to keep him as active as possible for as long as possible. If that meant regular physical therapy appointments and access to the necessary medical equipment, they would find a way to get it done.
“A really big day for me was when I got my first power wheelchair just in time for my third birthday,” he told us.
Zack’s family also wanted to make sure he had the support he needed to excel in school, so they relocated the whole crew, including Zack’s two older sisters, to Berea, Ohio - a district known for its inclusiveness for students with disabilities.
He would spend many of his school years attending after-school programs and summer day camps for kids facing their own challenges, and he absolutely loved it. He even attended camp away from home (much to his mom’s delight and dismay) as part of the MDA Summer Camp at Camp Cheerful. Once again, his parents stepped up to be there for Zack, and his dad took a week off from work to serve as his son’s aide.
Always the helpers, the Siek family identified a number of ways that the camp facilities could improve to be more wheelchair accessible. They were so thoughtful and thorough, the camp board later wrote a grant to implement some of the suggestions the Siek’s made. As usual, Zack’s family found ways to get things done.
Since those days of summer camp, Zack’s life has been filled with memorable experiences. Though he has used a wheelchair since he was three years old, it hasn’t kept him from pursuing his love for art, flying to California to meet his idol, Stan Lee, or even graduating with a BA from the Edinboro University of Pennsylvania.
Through every moment, he’s had the support of his family. Beyond that, he’s had their encouragement to seek independence and pave his own way. Whenever he hit a rough patch or needed some extra help, he knew who to call.
Two years ago, Zack realized his current power wheelchair - now more than six years old - was simply not going to cut it anymore. As he described it to us, the chair was “functional at best.” The joystick mount is broken, the seat elevator no longer works, and the chair frame is unstable with a tendency to tip forward when at an incline. Clearly, that poses a serious safety issue for Zack.
“Given the condition of my current wheelchair and the driveway at our house (which has broken concrete and large cracks in the surface), a trip anywhere is bumpy,” he said. “I get jostled around and it makes it hard for me to keep my balance. Sometimes, the bumps knock my hand off of my joystick, and I’m not able to keep control of my chair unless I have someone there to put my hand back onto the control.”
So, when his family realized insurance would not cover the cost of the updated chair features or driveway repairs, they found a way to get things done. They found Chive Charities.
These simple updates and repairs might seem trivial when compared with the impressive new ADA vans our community typically sees. But that’s why Chive Charities and our donors are so impactful. It’s not just the big grant items that make a huge difference in our recipients’ lives. This wheelchair conversion and driveway repair will significantly improve Zack’s quality of life and allow him the independence he’s worked his whole life to gain. Is it flashy? No, probably not. Is it life-changing? Let’s ask him:
“Thanks to the help of Chive Charities, I can finally get a new wheelchair that successfully meets my needs. My long-term goal is to maintain the level of independence that I have now. A stable wheelchair with the right features - and a driveway with no potholes or tipping hazards - will be the foundation for me to achieve that goal. I can’t thank you all enough for helping me meet these challenges and live an easier life.”
Thanks to our most impactful partner, STRATACACHE, and our Chive Charities donor family, Zack got the wheelchair conversion and new driveway he needed for a total impact of $14,097.
For the family who always does what it takes to get things done, we couldn’t be happier to pay it forward to them.
From new driveways and wheelchair conversions to hyperbaric chambers and ADA vans, we’ve been changing lives with the support of our generous donors for more than eight years and counting. With your help, we’ll do what it takes to get things done, too. Help us make the world 10% happier and become a donor today. DONATE HERE.
Read the original story HERE.
A few weeks ago, I sat down at my computer to write a story about DJ. We had just been on a call with his family a week earlier, watching him grin and giggle at the camera, despite the fact that he was still recovering from a recent surgery. That’s basically DJ in a nutshell. All smiles and happiness in the face of tremendous adversity, including the diagnosis of 13 rare medical conditions. His life: a revolving door between the highest of highs and lowest of lows.
Though he only recently turned three years old, DJ has recovered from more than 30 surgeries — nearly one for every month of his life. The pressure and stress on the family have been overwhelming, but all of us at Chive Charities were grateful to hear their story and thrilled to answer their call for help.
Because of our dedicated monthly donors, we were able to purchase a wheelchair-accessible van for DJ and his family. Better yet, we witnessed the live delivery while on a video call with the family those few short weeks ago. DJ’s smile says it all.
It was truly one of the most special moments in my life, and having a front-row seat to the life-changing impact of their grant item was something that’s difficult to express here. Unfortunately, my happiness was short-lived.
A week later, I opened my computer, logged onto Facebook, and was immediately greeted with an image of that sweet boy looking so different from the last time I saw him. Instead of smiling at the camera and laughing at his mom’s tickles, DJ lay motionless in a hospital bed, covered with blankets and clinging onto life.
This was the view into his 3rd birthday, so different from the celebration his family had planned. Seeing DJ in this state was truly one of the worst moments and having a front-row seat to the fragility of life that’s so common for rare medical families was sobering, emotional, and heartwrenching. It was like my own revolving door, a quick glimpse at a moment of peace before the chaos on the other side.
How frequently these families experience that change and how ill-equipped I was to handle it. For DJ and his mom, it was making it through 31 successful surgeries...then nearly losing him to one complication. A revolving door.
Frankly, after seeing what DJ was going through, I didn’t want to write his story — at least not this new version where everything wasn’t sunshine and rainbows and where a perfect ending wasn’t guaranteed. I wanted to package him up, share him with this community, and tie it together with a ribbon and bow. But that’s not how life goes for these families. It can’t always work out that way.
Then, it hit me. DJ is the embodiment of our mission at Chive Charities. Here’s a 3-year-old boy with 13 rare medical conditions, fighting for his life and doing everything in his power to keep going. Can you think of a bigger underdog than that? In his greatest time of need, our community said, “You’re not alone. We’re with you.” In his greatest time of need, our community donated, and prayed, and mailed cards, and sent good vibes, and did everything possible to let him know that he was supported.
How could I not tell that story?
It should come as no surprise, then, that with our community rallied behind him, DJ rallied, too. From a ventilator and heavy sedation to a bright-eyed boy with the hint of a smile on his face. While he’s not fully out of the woods quite yet, he is finally home and out of the hospital. This was him a few days after the story launched:
And this is him now:
All smiles and happiness in the face of tremendous adversity. Typical DJ.
No, it’s not always sunshine and rainbows. A perfect ending can’t be guaranteed. But when you’re on the wrong side of the revolving door, knowing someone is there for you on the other end can make all the difference. That’s what championing the underdog is all about.
DJ isn’t the first, and he won’t be the last. In eight years, more than 400 underdogs have asked for prayers, and good vibes, and community support. And more than 400 times, Chive Charities donors have answered. Are you one of them? Become a monthly member and join our mission to make the world 10% happier. Like DJ taught us, it won’t always be easy. But it will always be worth it. Donate HERE.
Read the original story HERE.
I remember the excitement, anticipation, and the feeling of not believing what was happening at about this time last year. There was nothing like it that we had felt before, such a magical feeling.
I am attaching some pictures. The one of the little doggy in the front passenger seat is Romeo, our newest addition that we were able to go pick up last October of 2019 way down in south Alabama from a Chihuahua rescue. Of course, it would have been impossible without our new set of wheels we had just gotten delivered in August!!
The beach pictures are from December of 2019, close to my birthday. We were able to go on our first trip to Panama City Beach, Florida. What a dream come true ! A friend of ours has a time share there and she blessed us by helping us to be able to go. My brother went with us and he paid for half of what expenses we had. We had a wonderful time!
Other than that, we have just enjoyed using our van to go to church, and to town, and places we need to go in living our life. The old saying is really true: "it's the little things that mean so much", but they are not really little. It's important that we have the ability to do what we need to do and want to do when we can, in regards to transportation without stress and worry.
There are no words to adequately express our thankfulness and much appreciation at being selected by Chive Charities board to bless us with this van. We will never forget such a deed that has changed our lives forever.
Read the original story HERE.
"Armani is doing amazing! She is now almost 4. She still uses her wheelchair daily and also has a powerchair now. The grant for her first chair gave her so much independence and also keeps the strength up in her arms. She works hard in her therapies 3x a week and learning to work new muscles. She is super silly, extremely smart and loves her baby dolls! We are extremely grateful for her first chair and thank you for all you do!"
Read the original story HERE.
"We have been quarantining and he has not been out much. However, we have gone camping two times with his van. There was no one around for miles. It was such a nice thing to do as a family. We packed him up and went up to our cousin's cottage in central Illinois. It was a great trip and we went another weekend after that. I didn't take many photos because I wanted to disconnect for a bit. We are planning on going again soon. We could not be more happier and relieved to have his van. It is because of so many good people that donate to Chive that we are able to get out of the house and just live life. We are so incredibly thankful because I can also take him to his appointments without having to lift him in and out of a vehicle that is not accessible."
"We are still camping every few weeks. It is the only thing we can do because of COVID-19. Joshua is an uncle now. Our oldest recently had a baby. I will have to get a photo of them together. We babysit tomorrow night and are so excited. He loves his baby niece sooo much."
Read the original story HERE.
Melanie and the family are all good. Just been a little scary so we are keeping Melanie safe at home. We have been really enjoying the kitchen! Melanie LOVES it. She really enjoys participating and mixing the food for family meals. She finished her last year of school this year. She was able to go into the age of 21 but with this virus we decided to let her finish. She graduated last year and even has her diploma now! She still is such a happy young lady, enjoying her time with the family. We are so grateful to Chive Charities for making our dream come true and making our home safe so we can continue to take care of Melanie.
Thank You,
Ms. Asche Smith Jones
Read the original story HERE.
Here are a few updates in my life.
I am currently still working as freelance graphic designer. I have created a new poster I am really proud of. It’s a poster to help bring awareness of the issues in Palestine. I have created a poster to help promote a rally protest for an organization call Al-Awda. This poster was designed to bring awareness of the issues in Palestine. I am really proud of this because it’s a design that speaks for itself. Here is the poster design below.
Another career aspect i am really proud of is this past year I have started designing various cards that included Wedding invitations, save the dates, graduations, business cards, etc. I have created my own brand call SAI Creative:
This was very enjoyable for me this year because I get to meet and work with new people with every project I get to be a part of. It’s really amazing to see the reaction of my clients when presenting my designs to them.
Here is my logo and samples of invitations: I also have an Instagram that showcases some of my work for this: https://www.instagram.com/sai_creative_designs_/
Read the original story HERE.
"Great to hear from you! I got notice from the organizers of the trip that the ceremony has been postponed until 2021. They offered a refund or to transfer our experience to next year, which is what I opted for.
I am still working at the hospital! Connecticut got hit pretty hard initially since we are so close to New York, and a lot of New Yorkers were leaving the city and traveling into Connecticut. Yale is the largest hospital system in the state so we were seeing a lot of COVID positive patients. Luckily none of my pediatric oncology kids tested positive for COVID. As employees, we are able to get tested every 4 weeks. Luckily though, the infection rates in Connecticut continue to drop!
Also, because in person support groups have stopped due to COVID, I have been running a virtual reality support group that patients can participate in from home! It's been going great so far... Yale was even featured in the Teen Cancer America Newsletter! https://teencanceramerica.org/community-stories/health-professional/using-vr-to-facilitate-support-groups/
How are you guys doing? I think about you guys often... in fact, every day when I put my prosthetic leg on to go to work at the hospital, I think of you guys and how grateful I am to continue to be able to do my job in these difficult times.
Thank you!! KCCO!"
Read the original story HERE.
When Haven's story went live, UMG had already sent out a box o' goodies to her front door. Not only did it bring a huge smile to her face, but it provided some pretty cool tunes for the families camping trip in their new AMS wheelchair accessible van. They were even able to get some fishing and swimming in on their trip!
Read the original story HERE.
"Eda and I are doing very well. I finished my bachelor's degree last fall from Briar Cliff University in Sioux City, IA. Eda attended classes with me and had a better attendance rate then some of the people taking the classes with me. Since then we have actually moved closer to retrieving freedom so we can have more interaction with them and more support.
I got a job with Wells Fargo bank as a lead teller. I was the first person with a service dog to be in a customer facing role with the company. It was actually quite a struggle to get the job as the company did not have anything in place on how to handle someone with a service dog applying for a customer facing role. I was very lucky to end up with a recruiter that had a strong military family that went to bat for me and took the case as high as was needed and actually helped change the company policy or ar least get one in place that with help other veterans with service did in the future get a job with them. The branch I work at irs very pet friendly. They have gone above and beyond to make her and I feel at home. She has a cot that she sleeps in behind the teller line. One of the ladies I work with even made a blanket and pillow for her. We even occasionally see puppies from RFI come in and get to say hi to her.
Jamie, Eda, and I attended her company Christmas party which was kind of a big deal for me. We even made it down to a very good friend of mines promotion ceremony in St. Louis recently. We also attended a renaissance festival with friends. Eda has greatly improved me and my families ability to get out and do things that would have previously not even have been considered before her."
Read the original story HERE.
22Kill was formed in 2013 to highlight the need to address veteran suicide and brought massive awareness through its viral 22 pushup social media challenge. When it became clear that police officers, firefighters, and emergency medical service personnel wanted and needed culturally competent, anonymous, and accessible care, 22Kill expanded its service base to include first responders. And now 22Kill recognizes there is a need to expand first responders to include the frontline healthcare responders, so they can have the same access to mental wellness and resilience care.
According to research conducted by the Meadows Mental Health Policy Institute, a nonpartisan, nonprofit organization working to change the condition of mental health in Texas, the current COVID-19 pandemic itself and the economic impact of mitigation efforts imposed to control it are both expected to result in direct increases in rates of mental health and substance use disorders, including deaths associated with suicide. The common denominator in the 22Kill mission is providing trauma-informed care for the mental health of those who run towards the fight; sometimes that fight occurs on the battlefield, on the beat, or in the OR, and 22Kill is honored to offer services to those who protect us.
Services include one-on-one traditional clinical counseling with a trauma-informed and culturally competent licensed clinicians, peer support groups, and check-in calls. Appointments and requests for information can be made online at www.22kill.com, phone 682-990-6242, or email: info@22kill.com
Read the original story HERE.
I have finished my training course and have started working with Valor. We should complete training by August! I will also be training another dog, Kiko. Both Valor and Kiko will be trained as my service dogs so I always have help if I need it. I will go down to certify with Kiko in a month and am hoping I will have Valor ready as well.
I’ve been slowly obtaining used furniture and other tools needed to train him but with the shut down and the county we were working with closed it’s been hard to get the furniture and adapt turning my basement and garage into training rooms.
Sadly, my father in law declined in his health recently passed away. We are doing our best to heal & do what we can do keep moving forward, we have faith that it will get better and I am keeping focused on the future. My current goal is to secure land for a future dog training program that will help other first responders and military members.
Read the original story HERE.
We got an update from Ryan and got to hear all the wonderful things he has been able to do since he recovered last year.
“I have been playing golf painfree. That isn’t something I even thought could be possible. I have been more active in my children’s lives and their activities. I have been getting things done around the house that I just couldn’t do for several years. I went to the Green Gala last year and just could not believe the welcome I received there. I hadn’t spent much time with the local Chive Chapter before the event, but I did see our Admins in Austin. The quality of people the Chive surrounds itself with is nearly unthinkable. I met the most giving human beings, EVER. I was there to show my gratitude for what you guys did for me, and I was treated like I was someone special. I will never forget that weekend.”
Isn’t it great to hear all the wonderful ways that a Chive Charities grant allows someone to take charge of life again? If you recall, when we published Ryan’s story last year, he was struggling to keep a job due to all the time he was taking off work for medical appointments. Well, a week after his stem cell therapy, he started a new job at Boeing and not only has he gotten an award for his work, he has also been promoted! The family was also able to go on hockey trips to Indiana and Wisconsin.
What an incredible update, isn’t it? That is a huge quality of life change and we are grateful to all you donors for making it possible!
Sadly, it is not all good news. Ryan had to start treatment a few weeks ago for a disc in his back that is pressing on a nerve and causing pain in my leg. They are going to do decompression therapy, PRP injections, physical therapy, and some trigger point injections. Ryan came at so strong before and we know he will come out strong again. Until then, keep him and his family in your thoughts so he can have a speedy recovery!
Read the original story HERE.
We recently heard from Olivia's mom who reports they had to sell their old home and are now settled in nicely in their new home. Olivia has been enjoying the bike so much and the whole family is thankful to everyone who made this possible. That is YOU, Chive Charities Donors. YOU made this possible and we can not thank you enough!
Read the original story HERE.
Using her grant-funded van, Jamie Lynn and her family were able to visit the beach this past September! It was her first time there and she had such a great time, including making friends with a seagul and naming him T-Shirt. It was such a treat for the whole family and they hope to be able to do it again soon.
She is also happy to report that with the help of a local non-profit, she was able to remodel her bathroom. This has helped so much with her mobility needs and the entire family is so grateful to finally have it finished. While the bathroom renovations have definitely helped, Jamie Lynn is still searching for ways to be able to use the restroom as independantly as possible and is looking for the right equiptment that can help her do that. Regardless of the challenges, Jamie Lynn continues to smile and bring joy to everyone around her.
Thank you Jamie Lynn for being exactly who you are and thank you Chive Charities donors for helping this little girl's beach dreams come true!
Read the original story HERE.
Like most other student's, Alex is finishing her school semester at home this year and her computer has come in handy now more then ever! She is using it for school on a daily basis and is so thankful she has it. Her playset as become her little getaway from her brothers and she has learned to climb the rock wall by herself to get to the top. Climbing this wall was such a challenge initially, so she has clearly gained some strength in her muscles, which is amazing! Her bed continues to be a god send EVERY night since she got diagnosed with chronic obstructive sleep apnea and can not sleep flat anymore. The adjustable bed makes it so she can actually sleep, which everyone is so grateful for.
Otherwise, Alex continues to be a bright light in her family and is all smiles as she sends love to her Chive family!
Read the original story HERE.
The family moved to Kentucky so that Ginny could attend Kindergarten at her mom's school and now she is a Kindergarten graduate! As her mother reports
"She was in the life skills class, which is a special needs classroom. Ginny's amazing therapist has loaned us a walker that we have been able to put her in so that she can be upright and more active with us. She sits up on her own more now!
Ginny now says momma, bubba, and uh oh. We are working on dada, but for now she yells “daaaaa” super loud to get daddy’s attention!
We were super lucky to have some awesome people from Clarksville Chive to help us this year! We had a dresser donated to us for Ginny to use as a changing table- they added a rail at the top for a changing mat and so she didn’t roll off! We also were lucky enough to have Santa visit our house! An admin of Clarksville Chive set it up, and another member came dressed as Santa and brought the kids books. We had a Chive Charities goodie basket delivered by a Clarksville chive member. I can’t say enough about Clarksville Chive. They know I’m the crazy baby food lady (because we use so much for Ginny) and they have helped us with Ginny so much through the years. Several of them have even messaged me to make sure that we had everything we needed during this shut down.
We also found out that Ginnys going to have another sibling which was completely unplanned and unexpected so things are a bit crazier than usual!
Thank you for being such an amazing organization! We love the Chive, Chive Charities, and our local chive!"
Doesn't that just warm your heart? Chive On Ginny, you are destined for great things!
Read the original story HERE.
Jane, Bryson's mom, reports,
"We love the van. It is perfect and Bryson loves the big windows. He was in awe just looking around and seeing outside. His sister Macie wanted to ride around in it all day!"
Thank you Chivers for making the world 10% happier!
Read the original story HERE.
Bennett has struggled with walking for years, despite intesive physical therapy and so much work from her and her parents. That's what makes this announcement extra exciting: Bennett has now taken her first steps!
"She is now taking forward steps in her new walker! This is a huge milestone, we have tried over 4 different walkers and strategies but nothing clicked. Her new walker is doing wonders for her and with tons of practice, she is becoming more and more independent and loving it!
We're so incredible grateful for Chive Charities & its Donors!"
This couldn't have happened without our awesome donors coming together! That's the power of this community. We are behind you 110%, Bennett!
Read the original story HERE.
Have you been worried about our recipients during these scary times? Well, we have been too, which is why we were thrilled to get an update from our girl Roz! Rozlyn's mom wrote to us to fill us in on how the family is holding up, and how the renovations to their home are going.
" We are doing awesome. Not a lot has changed for us since we homeschool (about COVID). We just aren't able to go therapies are meet with our co-op friends or go to dance. But... Matt is still working fortunately.
We have a ton of masks since she wears them for the flu seasons. We even have ones with charcoal filters. So we have prepared for this in a sense.
Our deck is done (just have to get the siding back on)!!! And now we are working on getting the kids rooms done and so they finally have their own rooms. Floors will be going in soon. We had some other issues with the house that to be addressed such as a new furnace and electrical issues due to a wind storm that had to be fixed. The electrical/windstorm caused a lot of things to get ruined. Such as our washer and dryer had to be replaced. But here some pictures of the deck and washer and dryer that funds have been used for so far....it's a work in progress for us."
It's always a huge relief to hear from our recipients and see that things are going great! We can't wait to see their home once all these renos are finally done.
Read the original story HERE.
When we first brought you Brandi's story, things in the world were beginning to get really crazy. Brandi desperately needed her house renovated so that she can safely navigate her own home. Chive Charities came in with the funds, ready to get things rolling and then... the virus happened. Even in the secluded state of North Dakota which at the time seemed extremely insulated from the coronavirus, it was becoming increasingly difficult to find resources and workers to complete the task. That is why, when you read Brandi's story, a huge part of her grant - the flooring- was still unfulfilled.
We are so thrilled to tell you now that Brandi's flooring is finally set, and she is so thrilled with the results! Her friends and family put in lots of labor to help get Brandi's house safe for her, and you donors provided the funds that made this possible, even in a time when everything seems to feel vaguely impossible. From the bottom of Brandi's heart, and our hearts as well, THANK YOU for making this amazing grant possible, and seeing it through to the end!
Read the original story HERE.
Things haven't been all sunshine for Ivan, but he's had some very happy days mixed in with the hard ones. In January, Ivan spent 13 days in the hospital. He had a port put in, had a bronchoscopy and then got sick with two viruses. Luckily, he was able to heal and come home with his mom.
After those struggles, Ivan got to have a ton of fun at Seacrest Studios, which is an in-house multimedia broadcast center that connects children with medical conditions with musicians and artists. Ivan met country star Randy Travis, who has had strokes and is most nonverbal but smiled the whole time just like Ivan smiles. Ivan was able to ask questions and interview his Randy's who answered for him. Ivan also interviewed Ryan Seacrest, Dan and Shay, Halsey, Kings of Leon, Brett Eldridge and then was able to call from his room in the ICU to interview the Jonas Brothers!
Ivan clearly has big things going on and he couldn't get there without transportation! Ivan's mom wanted to let all you donors know that the effects of your gift of the van are still felt and appreciated every single day. "I could not do this had it not been for the Chive family helping," she said, "and I will forever be thankful!"
Read the original story HERE.
Angel Flight West brought us some smiles with this update!
"David is one of four adopted children, two with special needs. He has a rare genetic disorder called Klippel Feil Syndrome in which two or more vertebrae in the neck are abnormally fused together. Untreated, it can cause serious nerve damage and chronic headaches.
The family lives in Orcutt, just an hour north of Santa Barbara, but the specialist he needed to see is 350 miles away at Shriners Children’s Hospital in Sacramento. Our pilots flew him up and back for the initial consultation and we'll be here for him whenever he needs to return."
Every child deserves to access they care they need, and if it just so happens they can do it in style and with smiles, then that's even better! Angel Flight West, you rock.
Read the original story HERE.
Jayden is defying the odds and taking things one day at a time! His family wrote in to let us know that Jayden has been doing very well despite dealing with chronic headaches and neck pain. He’s also been having some difficulty with his feet and may need to have surgery to correct some issues occurring as he grows. Jayden has surprised them all in what he’s been able to do!
Though it was predicted that Jayden would never be able to play sports, he is working and practicing hard tochange that narrative. Thankfully, adapted sports are a great fit for Jayden.
His mother wrote: "Thanks again to Chive Charities we are able to haul his equipment with us in the van. Jayden also met JD Danforth, a motivational speaker, who told Jayden that he can do anything if he believes in himself. Jayden walked away with that saying “yep he’s right and that’s why I can do what doctors said I can’t”.
Read the original story HERE.
Porsha is a survivor; no brain tumors, surgery, or law school can keep her down! She recently wrote to us to tell us how things are going for her and her daughter, as well as her service dog, Pearl, who was purchased through a grant from us!
"I sort of disappeared after the diagnosis that the tumor came back, I apologize. My anxiety came back really strong immediately. What was thought to be a regrowth was actually a pocket full of blood. I had bumped my head (nothing serious so I thought) and that’s exact area is where the pocket was. So I am aware now of how even the smallest things will affect me moving forward.
Pearl is the perfect match. She still isn’t fully housed trained and I blame winter for that. She naturally recognized my medical issues and really does help with my anxiety, she recognizes I do not sleep much and comes to comfort me. I believe her and my daughter have a friendly odds as to which is THE baby girl. I haven’t had her hair cut yet. She has had everything else."
"I found out I passed my Bar Exam and was sworn in a few weeks ago. I’m excited and very hesitant. I want to get back to normalcy and having the license gives me the hope I am just working on the actual courage. Here is another picture from the season. Pearl is caught running around here. She didn’t do too bad for her first shoot she couldn’t figure out how to pose for wanted to get down and jump around. Very hyper pup! In the words of my daughter, “ I just love her”.
We are so proud of you, Porsha! Keep on fighting for the life you and your daughter deserve!
Read the original story HERE.
Shelby's family wrote in to let us know how they've been doing:
"Happy Holidays! We are coming to the end of Shelby's grant period (so sad). I wanted to reach out and tell you how much we truly appreciated your help this last year. With Shelby's staggering medical bills we would not have made ends meet without this grant opportunity. Her hospital visit in May alone was in the tens of thousands of dollars. We don't look forward to footing the majority of bills on our own but take comfort in the fact that the extra support helped us pay off some of the bills.
Shelby has learned so much this year at her school. They have worked closely with her therapists to provide her every opportunity to catch up with her peers. They treat her like their own child. They celebrate the victories and help us through the hurdles.
I wish there were more organizations like yours to help educate people on rare diseases. I sometimes find myself explaining Shelby's disease to the doctors!!! That can be so strange.
Thank you to everyone that helps Chive Charities support families!
Read the original story HERE.
Jonathan's mother, Brenda, got in touch with us to give an update on Jonathan:
"He's been doing great, he's already 21 years old and very silly. He want to do everything his way lol. Jonathan still going to school and he will be graduated this year praying that after high school he can go to a special program or daycare to continue with his social skills."
We hope so too! As always, we plan to stay ni touch with Jonathan and his family, so expect more updates as we receive them.
Read the original story HERE.
Hiatham Breadily sadly passed away on October 23, 2019. He fought for years again his rare epileptic disorder, Lafora Body Disease, but he has lost the fight. Our thoughts are with his family during this difficult time.
Read the original story HERE.
Poppy is doing great these days! Her parents shared with us that she has become quite the social networker over the last year, and her Ipad from Chive Charities is her main catalyst for interaction with those she loves. She loves the camera and often sends pictures she has taken around the house. She even manages to find GIFs to add to her messages. School has also started to incorporate her Ipad into learning time as well
Her iPad is definitely her first love, but Spiderman is threatening to steal first place in Poppy's heart. She loves the Spiderman movies, and even got a Spiderman comforter and bedsheets for her birthday. She loves to "snuggle with Spiderman" while she drifts off to sleep.
Possibly the best news is that Poppy has been seizure-free for TWO YEARS! She's feeling great and is stronger than ever. We are all so proud of you, Poppy!
Read the original story HERE.
Brittany filled us in on what's going on in her life, and it is all amazing! She just scored her first paying job, in marketing, and she's so thrilled. She is also expressing her creativity through art, even being featured in a local art gallery. A job in marketing and doing art on the side? She sounds like that cool aunt you looked up to as a kid... and now she is! She recently became an aunt two times over, and is loving all the baby snuggles and family time.
Brittany is feeling more positive and motivated than ever, and she's spreading the love to everyone around her. She started volunteering at nursing home, passing out good vibes and positivity to the residents there. Her father was in a terrible car wreck, but he is in recovery right now, and Brittany is able to play a big part in his recovery by driving to doctors appointments and physical therapy. Keep on shining, Brittany!
Read the original story HERE.
"The girl who wasn’t expected to live celebrated her 11th birthday!" We love receiving awesome updates like this one from Alyssa's mom. While Alyssa has been briefly hospitalized a few times this year and undergone 3 surgeries, she has been staying postitive as always and enjoying time with her family. One surgery this past June didn't go so smoothly, and Alyssa had to return to the OR to manage an infection and revise her left rod. Now that she's in recovery, though, the future is looking bright!
Alyssa and her family were able to take their first cruise to the Carribean this summer, and they had a blast. Alyssa certainly works hard and endures so much; we're happy to see that she and her family got to play hard as well!
Read the original story HERE.
We are so sad to share that our past recipient James Donald "JD" Manuel passed away on October 8, 2019. JD fought for 24 years against Spinal Muscular Astrphy (SMA) and lived a rich, full life. Chive Charities was lucky enough to be able to make something awesome happen for him and his family back in 2014, and we are so happy to have been able to be a part of his life.
The loss of a Chive Charities family members never gets easier, but we have to remind ourselves that there is so much to celebrate in spite of losing JD. We want to celebrate his life, the love he and his family shared, the love he so freely expressed to us and to others as best as he could. JD, your memory will in on in the hearts of those of us who had the pleasure to meet you, to read about you, and to cheer for you on the sidelines. Thank you for making our lives ten percent happier.
Read the original story HERE.
You all remember Rozlyn, right? Her spectacular story set hearts ablaze, from your average Chiver to John Cena. We recently caught up with Rozlyn and her family to check in and see how everything is going, and, much to our please, things are going great! Rozlyn's health is stable and she's lookin' and feelin' good. Things are only getting better, as construction is almost complete on the wheelchair-accessible entrance and deck the family is adding to their home.
Our flash campaign made so many wonderful things possible for Roz, and one of the biggest changes is this one, allowing her to be able to easily navigate her home. The new deck will have a wheelchair-ready ramp for Roz to roll home on. The construction has been slow-going (isn't it always?) but the family is thrilled to see the progress on their deck. The roof is soon to come, which will finish up this massive home project that YOU donors made possible for this amazing girl! Roz and her family are so thankful to you all for making her life, at the very least, 10% happier.
Read the original story HERE.
This crazy community has done something amazing, unprecedented even. It’s almost impossible to describe. YOU have been a part of it whether you know it or not. You’ve helped theCHIVE community change the lives of hundreds of individuals with rare medical conditions, veterans on the verge of suicide, and first responders who need a helping hand.
With over 350 individuals helped to date, many of them with the rarest of medical conditions, it’s inevitable that we’ll lose a recipient we’ve all fallen in love with every once in a while. But that doesn’t make days like today any easier to face.
The following is a letter from a husband of a Chive Charities grant recipient, Bobbi Reeping. It’s the rawest emotion I’ve ever seen put into words and one of the most beautiful things I’ve read. Rather than try to describe it, I’ll let Mark take it away.
“Dear Chivers, I just wanted to let you know that Bobbi passed on September 15 due to complications of lung cancer. Her right lung was completely full of cancer, and her left lung only had a few pockets of air left.
Two days before she passed, Bobbi was sent to the hospital at 2am for a diabetic seizure. I thought she was going to die in my arms that night. But when she got to the hospital, the Doctor put a breathing mask on her.
For a day and a half, she was awake and was always trying to take off her mask and pull out her IVs. I kept holding her hands down. The doctor told me at that time she only had a few days to live. He said her lungs are starving for air and it feels like a drowning sensation.
She was in a lot of pain. All the doctors could do was give her morphine to keep her under. I stayed at the hospital for two days by her bedside. I think I told her 1,000 times that I loved her and that I will miss her hugs.
Throughout the next two days, Bobbi would wake up and tell me and the kids she loved us.
Her doctors told me whenever I am ready to let Bobbi go, to let her staff know so they can start the morphine drip. The morphine drip will basically put her to sleep and when she’s asleep they will pull off her breathing mask and she will take her final breath within 1 to 2 minutes. So she can pass quickly and quietly.
It was very hard to see her in pain and in suffering so on Sunday September 15, at 12:20am in the morning, I told the nurse that Bobbi is ready to go to Heaven.
The two nurses started the morphine drip at 12:44AM and they took off her breathing mask. In her room was my mom, my two kids, Maddi and Cody, Bobbi‘s father and sister. We all said our goodbyes and we told her we love her and will miss her.
During the time Bobbi’s mask was off. I played “Over the Rainbow” by Israel Kamakawiwo’ole. it was the song she wanted to be played during her last breaths.
Even during her last breaths, she fought for 27 minutes to stay alive. I kept playing her favorite songs and told her I love her.
The last song I played was me and Bobbi’s song. Elvis Presley‘s “Love me Tender”. I kept looking in her eyes telling her “I love you”. At the end of the song she took her last breath. 2 or 3 seconds later the alarm on her monitoring machine went off. The nurse said she had passed.
Her eyes were still open looking into mine. I told her we will meet in heaven when I pass and we will be together for eternity.
Bobbi is going to be cremated next Tuesday and half of her ashes will be sent to the National Cemetery in Hawaii. The other half I will hold. When I pass my kids will combine me and Bobbi’s ashes into one urn and we will be together in Hawaii for eternity.
Thanks to all the Chive Charities donors for their help with the shower they built us. She was on hospice for 5 weeks before her passing. I would literally give her a shower every two days.
I was in the shower washing her. It would take me 40 minutes to give her a shower. Her last three weeks she could hardly move or walk so I had to help her with everything. If you did not give us that shower it would have made the last few months with her so much more difficult.
May God bless you, theCHIVE, and Chive Charities. Thank you!!”
-Mark Reeping, loving husband of Bobbi Reeping
If you’re anything like me, your eyes are red by now. Mark’s powerful words still ring in my ears as I try to type this through misty eyes. His letter is a reminder that even though we may lose the ones we love, fighting for them while they are here is more than worth it.
We’ve now lost 15 Chive Charities recipients over the years and it’s a hard pill to swallow every single time. But we are forever grateful for the readers of our Chive Charites stories, the donors that make it all happen, and theCHIVE community that supports the underdogs like Bobbi. Most importantly, our recipients and their families thank you for helping them make each and every day count and making their lives at least 10 percent happier.
Rest in peace, Bobbi. You’ll be missed and know that your fight will inspire thousands for years to come.
-theCHIVE and Chive Charities staff
P.S. If you’d like to join the fight for the underdogs, like Bobbi, you can become a monthly donor to Chive Charities HERE
Read the original story HERE.
Sophia passed away in the early morning hours of September 18, 2019. Her 12 years of life were fraught with difficulties related to her undiagnosed condition, but were also filled with the immeasurable love of her mom and dad, as well as her two little brothers. Sophia touched many lives, and we are honored to have her as a member of our Chive Charities family forever. Our thoughts and prayers are with Sophia's family during this difficult time.
Read the original story HERE.
Bailey, Makayla's service dog, retired this year and is living the good life learning to be the family pet and do normal dog things- use a dog door, sleep all day, do what she wants....when she wants. Her transition into retirement hasn't been easy for her. But like with any mother, no matter how much your kids don't need you anymore, you will never stop trying to take care of them.
Makayla’s Mom shared that when they were out taking Makayla's Senior pictures, they happened to stumble upon a parking garage. "In it, with sun rays shining brightly, was the number 33 painted largely on a pillar. That happens to be the number of brain surgeries Makayla had to have before we found one that finally worked. It's so unreal! 8 years ago we weren't even sure that she'd make it another year, much less reach all the milestones a normal teenager should get to have- getting a drivers license, graduating high school, going to college. And here she is, proving once again that "impossible" is nothing more than a word."
Read the original story HERE.
Over the last couple of years Rylan had to undergo several procedures. In June of 2017, she had heel cord release surgery to help improve her balance and ability to walk. Her recovery went pretty well, although she did have an allergic reaction to the cast material, she to be in a cast for 3 weeks and then in a boot for 6 weeks. She also underwent 6 weeks of physical therapy to learn to walk again with her new AFO's. Then in December of 2017 after Rylan struggled to gain weight she had to undergo g-tube surgery. She was in the hospital for 4 days. She is now fed through her g-tube 3 times a day for supplemental purposes but she can still eat her main meals by mouth. Rylan gained 10 pounds within the first 6 months of this procedure.
Early last year, in January of 2018 Rylan had an EEG because we thought she was having seizures again. Her medical team upped her dosage and they seems to have managed her seizures so far. Recently, Rylan was fitted for her own wheelchair. She can still walk with her AFO's but not for long distances. She uses her wheelchair at school and if we are out and are going to be walking long distances.
Rylan also have had many celebrations over the last couple of years, including a combined birthday for Rylan and her siblings with a blow up water slide, visits from Santa, starting 2nd grade and moving into her new house with her very own room! Bleu Roux Smith, Rylan’s goldendoodle puppy also joins the family this year! Bleu will be Rylan’s emotional support animal/therapy dog and will start his training soon.
Read the original story HERE.
We had even better attendance than last year, and it was such a wonderful day filled with over 20 activities for the kids and their families! It ended on an incredibly positive note with therapy sessions for both the kiddos and their parents!
Some Campers shared their comments with us:
"My son loved seeing kids from last year and playing with kids in the same situation as him.” &
"The best part of Camp was all the love by son received from Dr.'s and all the volunteers." &
"Camp makes Melina feel normal when she sees there are kids with different disabilities and she's not alone. And there are no stares..."
Read the original story HERE.
"Since my Dad has had the wheelchair he can actually get out of the house now and go places with his family and grandson. For his birthday, we were able to visit the Cleveland Science Center. My son, Ryan who is 6, has been wishing to do something with his grandpa this summer. Both my son and my dad were really happy that day that they could do something together. We would never have been able to do this if not for his new wheelchair. And for that, we are truly grateful! We are grateful every day for the generous Chive Charities donors who made this possible. KCCO!"
Read the original story HERE.
"I’m so thankful for the financial assistance that Chive Charities provided for me to be able to get Elliot. Since the last update, we have been to NYC and just recently returned from a road trip to Washington state. Elliot has been so good for me and we are really enjoying life together, thank you so much! KCCO!"
Read the original story HERE.
"We have been doing pretty good. I am becoming a master with my wheelchair - It's only been one year since I have received the wheelchair but can't imagine how I lived without a power chair for so long. It is so great to be able to leave my husband where he is standing when he can't stop talking to everybody! We are excited to see everyone at the Green Gala in November!"
Read the original story HERE.
This week Mason’s family and his medical team decided that it is time to do more for Mason’s lungs. Mason has Pulmonary Alveolar Proteinosis, which means his lungs are overproducing a surfactant because his immune cells can’t recycle it properly. So, the invasive way of treating this is to “wash his lungs”. Mason’s pulmonologist will put in massive amount of saline into Mason’s lungs and suck out that saline plus all the extra surfactant. This will take many hours in the OR. They will only do this in 3 hour increments to keep him safe from anesthesia. This will be repeated until all the lobes of Mason’s lungs are finished. This will take 4 or more trips to the OR. Mason will go to the OR once a week for this. So, that puts us in Cincinnati for over a month. To keep up with Mason’s progress, visit his Facebook page: https://www.facebook.com/littlekidsbigdreamsjourney/
Hang in there Mason! Your Chive Charities community is thinking of you!
Read the original story HERE.
We have an upcoming appointment in Dallas at the end of the month and we were lucky enough to be accepted by Miracle Flight for this trip. My husband has finally returned to work after being on sick leave from continued complications from a spinal cord injury due to a back surgery a few years ago. Our family has been through so much and we continue to fight everyday to stay afloat. We just recently found out that Gavin has sleep apnea due to severely enlarged tonsils/adenoids so he is scheduled to have surgery later this fall. We can’t say thank you enough for the support of Chive and appreciate everyone generosity.
KCCO!
Read the original story HERE.
"At his last oncology appointment in March, his oncologist said his bones are looking great and developing well which is the best new we could have asked for. He started his laser treatments in January of this year and has gone through 2 rounds so far. We have seen an impact in the redness overall on his cheeks and are very hopefully that it will continue as time goes on with more treatments. This last year has been an adventure for Van. He recently turned 3 years old, went to Disneyland and met his favorite mouse in the world, saw the beach for the first time and enjoyed playing in the sand with his grandma and brother. He loves to swim and also absolutely loves the Christmas Season. For his birthday in April, he asked for a Christmas Tree cake which we all thought was hilarious. He is looking forward to pre-school in the fall and loves playing with Legos and riding his motorcycle around the house.
Although most of the this year has been great, we did have a scare a few months back. With his immune system compromised, he got a small cut on his thumb that quickly spread into a full blown infection within a matter of hours. It was quite scary for all of us. From the doctors office, they sent us directly to the ER to have his thumb undergo surgery. It healed up pretty quickly but it was a reminder to us about how easy he is compromised and how a tiny sliver can put him in the hospital quickly. He is still very small, only weighing 25 lbs but he is flourishing. He is smart and always asking questions about everything. The other day he asked us what tart meant because we were eating raspberries, his favorite. It was funny to hear him ask my husband and I because we kept saying it.
Last October, we were finally able to meet other patients and families who have RTS children at the Sharing and Caring RTS Foundation Conference. It was very eye opening and real to share similar stories and hear about how their children and growing with RTS and what we can expect in the years to come. We were also able to meet Dr. Lisa Wang, the only research doctor in the US researching RTS and its effects with Bone and Skin Cancer. It was very helpful and she has been a life saver to our family."
Read the original story HERE.
Her Mom, Merily shared this update with us:
"We love the Van from Chive Charities, its allows our family to take so many adventures! Chive Maryland also became part of our family. We have been on road trips to Florida to visit family, meet up with another Chive Recipient Max and go to Disney World! We are so grateful to Chive Charities and their generous donors for everything they have done for our family!"
Read the original story HERE.
"Shelby has been doing great! She just had her 9th birthday back in June, and time just keeps going! We thank God for giving her another year of life to celebrate. Overall she’s doing well! No huge changes for Shelby right now, she is just continuing therapy, home school and of course growing. getting bigger every year! Just enjoying our summer time together! KCCO!"
Read the original story HERE.
"Throughout the year, the twins had a couple minor medical procedures done. They are both healthy and conquering their teenage years! The long, snowy winter finally ended and they were busy with school, activities, and spending time with friends. This summer we’ve spent a lot of the time in the pool, meeting up with family and friends, and hanging out at the new park by the house. Having the van and lift is always convenient. Lexi loves running errands with us and Zak always enjoys his car rides. The van is a safe and reliable way for our family of 6 to get around. We are very thankful of the freedom it allows us the have.”
Read the original story HERE.
"We have had a ton of medical travel. SO much! It's been a crazy whirlwind of back and forth from MI to FL, multiple fundraisers, and MAJOR double leg surgery in December with the only doctor in the world who performs this type of surgery. Anastasia has gone from having legs that are stuck in a bent position to being able to stand up and walk short distances, in a very short period of time. At 4 weeks post-op she was weight-bearing and by12 weeks post-op she was walking independently! Her progress from that surgery has been so amazing that even the doctor was even astounded!
Ana has been attending a Montessori school all year and is currently reading at a second-grade level, writing, and doing math. Her social media presence has also taken off and is really helping raise awareness of her condition but best of all, she's showing other AMCers and parents of AMCers that nothing is impossible and because of her story, they are not as worried about the future for their own AMCers and some are even seeking similar treatment!”
Read the original story HERE.
Max recently took a fun trip in his van to see Toy Story 4! This movie outing was the first movie theater experience that Max and his family were able to take all together and he LOVED it! Dianely, Max’s Mother shared that "He was talking during the entire movie and laughing at a lot of the scenes. I'm telling you, this last month has been a huge 180 for him.”
We are so happy for Max and his family, wishing them all many more movie adventures in the future! KCCO!
Read the original story HERE.
While there she had 3-4 hours/day of intensive physical and aqua therapy using state-of-the-art equipment and working with licensed physical therapists who were highly experienced in patients with spinal cord injuries. Therapists focused on strengthening the muscles in her weak, right leg and on improving her walking pattern (gait). They also developed an idea for a different kind of leg brace that she may be able to use going forward. In addition, they provided us with a home therapy plan tailored specifically to Sophia's needs. With this plan, we can continue to work at home on improving function in her leg.
Thank you to all of the Chive Charities donors for helping us make this trip happen!
Read the original story HERE.
After over 300 lung surgeries, doctors told David he was just too fragile to qualify for a lung transplant. That’s a hard conversation to have, it’s the kind of conversation when the story of your life shifts from “If” to “when.” Still, David never complained. Not once.
We can’t imagine a life akin to breathing through a straw. David, however, competed to the end. Before the Wegener’s assaulted his lungs he was a world-class lacross player. Post-Wegener’s, he took up fishing, and then got so good at it he turned professional. Hunter S. Thompson once said, “When the going gets weird, the weird turn pro.”
Unbelievable.
David was a constant presence at theCHIVE HQ and the Green Gala. Every time we saw him he was positive and smiling. He wasn’t just our friend; he was a person whom we all respected. He was the strongest person we knew.
The last time we spoke, David told us that if it wasn’t for theCHIVE, the community, and the support from Chive Charities, he wouldn’t have made it as far as he did – An important reminder that what we do here matters. And, often times, what we do here is hard.
Breathe easy, friend. Your legacy will live on, you will be remembered
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"I'm doing really well! I am back up to full-time education with the help from the SmartDrive and the Chive Charities donors! I also have a job working on campus as a student worker. My health is still up and down, but I'm taking it one day at a time! I'm still fighting the accessibility issues on campus and I'm slowly getting places. With all this basic advocacy I'm doing lately, I'm starting to wonder if I should do this for a living! It's time the world knows that people with disabilities are equal and deserve equal access to goods and services!”
We could not agree more, keep up the great work Charlotte! KCCO!
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"Everything has been going great with Gibbs! He is my constant companion, to the point where I get odd looks if I don't have him. A couple of places have said they will not assist me unless Gibbs is there as well! We are in his final phase of training, and once we complete it, I hope to start training him to also be a therapy dog so we can visit others that could use the love of a dog. Gibbs is getting big as well, last weigh in had him at 75lbs at a year and a half as of last week. I don't know where I would be without him, he has brought the world back to me. Thank you to all the Chive Charities donors who made this possible!"
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From what it appears he also has a disruption on Chromosome 16 and could have something called Tuberous Sclerosis-2. We are waiting to hear back from the specialists on which steps to take next. Good news though summer is here and we added a new deck around the pool, and the boys are ready to jumped in! I also started trying Lego therapy with Bryce and it has been super effective! Who knew his love for Lego's would actually double as a bonus for therapy!
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Sarah also shared that, "Caroline can now get on and off the bus independently and no longer requires walking device to do so. Her expressive language skills are continuing to expand and she is now able to put together 2-3 words at a time, such as "Milk please." or "I want chocolate." Caroline still LOVES to swing on her Chive swing set, and can do so independently now in a regular swing, not one with a full back. She also continues to spend time daily in her Chive sensory swing in her room. She even fell asleep in it last week!
Caroline loves going to playgrounds, the movies, the Oregon Zoo and of course anything with water. Her current obsession is hats, especially sun hats. This little lady loves checking herself out in the mirror while donning one of her large repertoire of hats and wigs. Our next big adventure is moving in three weeks, the kids will be switching schools and Caroline will be getting new Personal Support Workers and therapists. It will be a challenge, but an exciting one!"
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Bobbi is having breathing difficulties. Her cancer has spread further into her right lung, to both of her hips, to her ribs & sternum, and the right side of her skull.
The shower that Chive Charities gave us has been so helpful. When her body aches are to much for her to handle, she takes a long shower and she lets the cold water or sometimes hot water hit her body to soothe the pain. There are times she can’t stand up in the shower, so she sits on the shower bench to bath herself. We are so thankful for the help you have giving to us. If Chive Charities did not help Bobbi with the shower, I know she would have falling and her hurt herself and she does not need anymore pain.
Bobbi is such a warrior and remarkably, Bobbi can still get around and go places. I never knew a person that stays so positive about fighting to stay alive then Bobbi. For example, when her Oncology Doctor told us that her cancer had spread further into her bones, she replied with "Well at least its not in any of my major organs, I still have a fighting chance to live longer".
Keep Calm and Shine On Bobbi! You Chive Charities Family is cheering for you!
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Brianna’s parents, JJ and Melissa told us:
"We are so blessed to have this bike even more so than before. At the end of March we were much anticipating spring time weather so that we could get Brianna back on her trike but in early April Brianna had a massive seizure and aspirated stomach acid into her lungs. This episode placed her at the children's hospital in intensive care for almost a month. She was on a ventilator for 21 of those days. She has spent most of May so far regaining her strength. And now that Brianna has regained her strength to sit up and use her arms, she can now do strength training on her bike! She is not holding onto the handle bar like we would like for her to but we know she will get there with time and practice!!! She has overcome so very much and thanks to kind organizations and people such as yourselves, Brianna can rehabilitate on a daily basis out of the comfort of her own home surrounded by friends and family!
KCCO Brianna - Our forever strong girl and Ring 14 Warrior!
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It stands in the Veteran’s Memorial Park in Cody Wyoming and will serve as a permanent salute to all military dogs and their handlers who have saved lives around the world for more than a hundred years.
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Makayla’s Grandmother shared with us that they recently were able to attend a going away party in San Diego, and “loading Makayla in and out was a Breeze! Thank you Chive Charities for making this possible!”
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Camp Cosmos 2019 will unite families affected by craniofacial differences for a day of self-esteem building and therapeutic family activities! Registration for Camp Cosmos 2019 is now open. To register, click here.
Camp Cosmos launched in 2018 as the first day camp benefitting San Diego County’s craniofacial community, and garnered almost 200 camp participants at its inaugural event. Camp Cosmos aims to foster joy and self-confidence, and build relationships amongst kids, families and local care providers in the Southern California craniofacial communities. The day camp incorporates both open play and structured activities to help families undergoing similar experiences engage with one another and their clinical treatment teams outside the clinical setting. Activities will be facilitated by child and family therapists, nurses, doctors and other specialists who will lead self-esteem building and camaraderie-focused activities.
“Camp Cosmos gave us the opportunity to get to know our patients and their families in a fun and casual setting,” said ConnectMed President Dr. Amanda Gosman. “The camp builds invaluable trust that makes future and even past surgical intervention and hospital stays less traumatic.” The first half of the day will feature inflatables, organized games such as giant Jenga and giant Connect 4, and other lawn game tournaments. A music play station led by a licensed music therapist will be available as well as traditional carnival activities, including face painting, a wacky hair station and more. The latter half of the day will feature break-out sessions with structured small-group therapeutic activities for both children and their parents.
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Gavin is 3 weeks post surgery from having the hardware removed from his hip that was placed during his major surgery last August. We have one last trip (hopefully - we already traveled back and forth 4 times in the past year) to Dallas for this year for Gavin to have surgery to remove the plate in his leg. They must remove the plate in order for his leg to continue to grow in length and not pull the plate out on its own. It has been the best decision we ever made to take Gavin to Dallas to see Dr. Kim and we couldn’t have done it without the love and support of our family and friends!!
Gavin is doing great and ready for summer (although he is using a walker/wheelchair right now). During our last visit down to Dallas we were told that we needed to return in August for another follow up appointment along with routine follow-ups each year once maybe twice a year. We were so hoping that this last trip for his surgery was going to his last for awhile. The last couple times going down to Dallas we scrapped up some money and asked so family and friends to help us out. Times are tough and money are tight but we greatly appreciate everyone who has helped us along this journey.
Thank you to all of the Chive Charities donors, from the bottom of our hearts, we appreciate you!
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Armani’s Grandmother Jodi was excited to share this update with us:
“Armani's chair is amazing, she is like a pro already! God Bless all of the Chive Charities donors, thank you so very much for this life changing gift for Armani!”
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Josh recently underwent two rounds of chemo therapy to help rid his body of disease and is currently receiving dialysis threes days a week. You might remember from Josh’s Chive Charities story that his brother was initially identified as a match but after additional testing it was determined that a kidney transplant from his brother would not be successful due to incompatible antibodies. But just a few months ago while at a fish fry fundraising event, Josh was surprised to receive a FaceTime call from his cousin who recently got tested and learned that she was a match! Surrounded by his friends and family, Josh learned that he had a new opportunity for his long awaited Kidney Transplant. Josh will now return to UAB in Birmingham, Alabama in three months for a final evaluation before he is schedule for kidney transplant surgery.
Josh shared this message with us, "I can't thank Chive Charities and TheChive enough for all of your support!! I have an amazing support system who remind me everyday that I will get through of this. God works in mysterious ways and he uses every person in some way or another. I just don't know what his plan is for me but I'm ready. He leads and I follow.”
Chive Charities awarded Josh with a $5,000 grant for post-transplant lodging expenses that he has so patiently waited to use. Since Josh lives too far from the hospital to recover at home, so he’ll need to stay at a nearby hotel for three weeks of post-transplant care. This grant will help get Josh back to his happy place sooner, we’ll be with him every step of the way, so stay tuned for post-transplant updates and more on Josh’s recovery!
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Participants who attended were able to build on their skills and knowledge when called to respond to a vehicle or heavy rescue extrications call. Firefighters received life saving classroom instruction and hands on practice challenges were they worked at a fast pace to get entrapped patients (live and mannequins) extricated while racing against the clock and putting together everything they learned from the 3 days of training.
The Puyallup Extrication Team was able to purchase two complete sets of Hurst Jaws of Life along with the batteries and chargers to go along with the set. Jeff Pugh, President of the Puyallup Extrication Team sent us this message:
"Your gracious Chive Charities grant to our non profit has allowed us to continue the education and training we have been providing for the past 19 years…THANK YOU."
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Participants enjoyed a fun filled three night, four day stay with their families at the Silver Spur Ranch in Bandara, Tx, the perfect place for everyone to relax, have fun, make memories, and enjoy their surroundings!
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Marilyn arrived in style with her new Wheelchair Accessible Van and using her motorized chair for the first time when she attended her most recent doctor's appointment at the VA medical facility!
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This condition can occur when certain bones in the skull fuse prematurely. Kenley is scheduled to undergo surgery and will have an external ventricular drain (EVD) implanted, this device is used in neurosurgery to treat hydrocephalus and relieve elevated intracranial pressure when the normal flow of cerebrospinal fluid inside the brain is obstructed. In addition to the EVD, Kenley will have an Intracranial Pressure Monitor placed on her brain to help doctors measure the pressure on her head. Kenley will remain in the hospital for 2 weeks while her intracranial pressure is monitored. Shortly after the 2 week monitoring period, Kenley will undergo a major surgery, called a Cranial Vault Reconstruction to reconstruct her skull.
Kenley’s Mom, Morgan shared that "Its going to be stressful and painful for Kenley but eventually they think she will be a lot happier and have a better quality of life.”
Morgan also shared just how much Kenley’s grant items have helped her, sharing "she uses the mats nearly every day doing her own tumbling stuff and has learned to do back bends, cart wheels and the splits! The playground has been a HUGE assest for her physical therapy at home. The home therapist loved it last summer for her! Her seizure watch has been an essential part in her well being. I can see how she is while at school which is a huge relief for me and the carseat is great, she loves it and has figured out that it has built in speakers for her music ! She thinks its the best thing ever!"
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Melanie has waited two and a half years and the time has come to begin training!
Melanie will be spending the next two weeks at the 4 Paws for Ability training center in Dayton, Ohio. While there she and her service dog Rowdy will be working together to build a relationship based on teamwork. By the end of the training program, Melanie will be able to understand how to use her service dog in the ways that he was specifically trained to help her. Melanie will be equipped with all of the handler knowledge needed to utilize her service dog, Rowdy and to incorporate their training process into her lifestyle when they return home to Virginia together.
So far, this dynamic duo is doing fabulous! Keep up the great work Melanie & Rowdy!
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"The wheelchair accessible van has been beyond amazing! It is a huge blessing for Tayden and our whole family! Tayden has had been able to enjoy so many trips to Wal-Mart in the new van! Tayden has also been to the zoo, adventure land, and many more fun places. Thank you all so much for not only the van, but FREEDOM to go anywhere!"
Hailee had shared with us before that Tayden will never been able to walk or talk, and his physical limitations keep him from doing, well, most things. But car rides and hitting up Walmart for some shopping and people watching? That’s Tayden’s jam. And because there are precious few things that bring him joy, Walmart is important.
Enjoy your many rides Tayden! KCCO!
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Roxanne shared that her and Gracie have been to Memphis to visit friends and explore the city, followed by a girls weekends with no true destination in mind and ended up in Jackson, Tennessee. We then woke up and traveled to Holly Springs, MS. On our way we visited a drive thru safari in Alamo, TN and Gracie was able to feed animals from comfort of her chair. Mostly recently traveled to Charlotte, NC to meet new friends and family. We were able to connect with an old friend whose son also has Prader-Willi Syndrome.
As always we’re excited plan our next excursion, especially with summer approaching. One of my goals is to make it to Texas to the all-inclusive waterpark for individuals with disabilities, Morgan’s Wonderland in San Antonio.
As always we are blessed daily! We have named our van Faith! Like many, I struggled with faith in the past but I no longer do, I know my God is bigger than anything I (we) face daily. I know he is watching out for me and my girl. We continue to be thankful, grateful and blessed every single day!
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Alex was recently diagnosed with sleep apnea so her bed has been the best thing ever!! She now has to sleep in an elevated position every night, or she can’t sleep. In the next couple of weeks she will be getting a CPAP machine to help her. She has also been busy playing her educational games on her computer, her favorite is ABC Mouse. We can see that she has started picking up new concepts. She is catching up quickly Alex’s play-set has been such a great additional to her home. She and her Occupational therapist have been able to work on strengthening her muscles and her coordination. The play set has also help Alex self regulated when her behaviors are flared.
Keep up the good work Alex!
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While Angela is not quite ready for her to start driving, they both are beyond excited to celebrate her 17th birthday coming up in November. It was 9 years ago that Alayja first began experiencing the symptoms associated with Acute Disseminated Encephalomyelitis but that has not stopper her, Alayja continues to be a happy, BEAUTIFUL, blessing. Alaya and Angela are busy preparing for another surgery, Alayja will undergo a another back surgery soon, most likely next month!
Your Chive Charities Family will be thinking to you and sending you well wishes!
KCCO
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I don't know if you can even imagine how much the gift of the van has been helpful and changed our lives and Grant's. The first time I used the van was to take Grant to a doctors appointment. WOW WOW WOW.... I could not believe how easy it was to get him and his wheelchair in and out...no lifting of his chair in and out and no worries trying to get Grant in and out of his car seat. Jenna and Greg have been able to take the kids on two "mini vacations" to a water park in Wisconsin...so much more comfortable for Grant to ride in his chair.
This little guy amazes us every day...and if he was able to speak I am sure his first words (other than Ma Ma) would be THANK YOU CHIVE CHARITIES!!
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Thanks to your generosity, the Chicago Police Memorial Foundation (CPMF) has provided over 10.2 million dollars in financial support to Chicago Police families in need since 2007. In 2018 alone, CPMF provided $988,000 in financial assistance to Chicago Police Families in need. The last few months have reminded us how important our mission is. As you know, 2018 was a difficult year for the Chicago Police Department. With the deaths of Commander Bauer, Officer Jimenez, Officer Gary and Officer Marmolejo, CPMF added 8 additional children into the educational assistance program. We have promised to educate these children - along with 21 Gold Star children currently in our educational assistance program - through college and beyond. We will never forget these children, their families and their loved ones who made the ultimate sacrifice for the City of Chicago. We thank you for your continued support and for honoring your promise to never forget!
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Madi’s Mom Lisa shared with us that “Madi’s recent scans showed her scoliosis has gotten worse but that has not slowed her down. Outside of her battle with pneumonia and recent scans, Madi has been doing great.” Madi is attending school and is enrolled in the 1st grade. She loves going to school and spending time with her friends. For Christmas, Madi got some new pet friends. Madi received colorful fish who she has named after her favorite TV characters...the golden girls, it is her favorite shows.
Get Well soon sweet Madi! KCCO!
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While Bryce has regularly scheduled visits to the Rochester Mayo Clinic for his doctor appointments, he has some important appointments on the horizon next month. Recently, Bryce has had some regression with sleeping. His mother Kelly shared, "we're back to being up at 3 in the morning, which is about the time I get home from my nursing job, and before Brandon leaves for work at the prison”. It was after Bryce started to show a little regression that his family learned there was disruption on a different chromosome. Next month he will be seen for labs test and a consult. This weekend Bryce will be going through a rough time since his system will need to be cleaned out for his upcoming lab work. Kelly shared "We finally found an amazing urology doctor that is really fun with Bryce. I thought we were the only family that had numerous conversations about poop a day! We are asking for thoughts and good vibes as the next couple of months are going to be crazy with trips to Rochester.”
Sending lots of good vibes to you Bryce! KCCO!
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Reid is doing okay considering all that he is dealing with. His disease, Recessive Dystrophic Epidermolysis Bullosa (RDEB) is a relentless disease that tries to rob kids of their lives. Reid travels to Minneapolis several times a year for continued evaluation of the transplant and to seek new treatments. Reid’s doctor, Jakub Tolar, who is now the Dean of the University of Minnesota Medical School has several treatments that he is working on to get approval from the FDA that could greatly improve Reid and others with this tragic disease. Reid has received two rounds of a clinical trial, which took tiny skin grafts from his sister and was applied to chronic wounds to deliver cells which contain the gene that Reid did not make directly to the site. These grafts have been successful and will continue to be used as needed. Last July, we took Reid to Minneapolis for a checkup and performed a swallow study as he was having difficulty swallowing. The doctors were very alarmed and a somewhat emergency OR visit was scheduled to look at his esophagus for issues as RDEB can devastate the mouth and esophagus. The doctor discovered that scarring from the simple act of swallowing had closed the esophagus 100% just below where the trachea is. A dilatation to open the esophagus was performed and it was a success, but we must be persistent in monitoring this in the future as it will likely happen again.
Reid tries to be like any other 4 year old and wants to play with his brother and sister constantly. He is currently doing preschool in the home along with physical therapy to help him stand and eventually walk. He is practicing with a walker, but usually gets around by crawling and scooting or his wheelchair. Reid loves to play with Legos, blocks and any kind of car or truck.
Reid and our family are extremely grateful for Chive Charities and the generous supports. The grant was and still is life changing as Reid has a much safer environment at home to live in. We are blessed to have had this opportunity.
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Ricky has lost nine of his brothers from his unit to suicide since their return from deployment. He's determined not to lose anymore. Ricky has battled and overcome mTBI and PTSD himself with the help of Boot Campaign, and this ride is to show other veterans that you can adapt and overcome if you reach out and ask for help.
On April 13, 2019 paralyzed US Army veteran Ricky Raley and three other veterans will begin a 1200 mile hand cycle ride in Dallas that will end at the Navy SEAL Museum in Ft. Pierce, Florida two weeks later on April 27. This is Ricky's second ride; last August he left the 9/11 Memorial in NYC and cycled more than 1500 miles to Tampa Florida.
To learn more visit: https://bootcampaign.org/events/raleyroadtrip2019/
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This world has lost a precious soul. Daniel Haertling passed away in the comforting arms of his parents after a valiant week long battle in the ICU and a lifelong battle with Freidrich's Ataxia. Our deepest condolences go out to the entire Haertling family. Rest in Peace Daniel.
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Shelby has been interacting with other children and trying to say new words. Her developmental therapist sees her at daycare and said that she is so happy and trying things she's never seen her try before. Her teachers are working on her developmental goals with her daily. They are also making sure Shelby gets the best diaper care and diet that's right for her. The most important thing is that they genuinely care about Shelby. If she's having a tough day they hold her and love on her like I would. That makes my mama heart so happy!
Shelby is having a very difficult time passing her stool since the beginning of December. She went from being comfortable but having a tough day every now and then to being in pain all day, every day. Sometimes to the point of passing out. We travelled back to her doctor in Ohio the first week of January and she had a Botox procedure to hopefully relieve some of her strain. The Botox hasn't helped at all. We are currently trying to change up her medication regimen to help her stool easier. She's screaming for 30+ minutes when she goes. She tries so hard it makes her break a sweat. It's so difficult to watch her go through it. Hopefully, our next update will include a successful regimen!
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Camp Casey envisions a way for every family affected by childhood disease to experience the joy of horses, their particapants could not be happier with their programs, here is what they are saying:
“Camp Casey is the best! We had the best day ever! The staff was so kind and really enjoyed what they do. They have fun with the kids and do an awesome job. I didn’t want our horsey house call to end! Thank you for giving us this memory!”
– Cherie of Warren, MI, mother to 8-year-old, Andrew, diagnosed with desmoplastic small round cell tumor
“From the first phone call to the final farewell, everyone at Camp Casey was extremely kind and helpful. The event was so organized and seamless, and the volunteers and workers were all amazing and great with the kids! We are so thankful to have had this experience for our fighter, friends and family. This is a day none of us will forget!”
– Julianne of Macomb, MI, mother to 3-year old, Ellie being treated for acute lymphoblastic leukemia
“The water park was really fun! Our whole family had a great time and tried to spend every minute that we could there. We loved the riding, too, but the water park was a really nice surprise. Our son, Rio had just learned to swim the week before in a crash swimming course (a little
later than most kids due to his illness). He had such a great time playing in the current of the ‘river’ and practicing floating. He gained a huge amount of confidence in the water so the timing was perfect! He loved the water slides and had never experienced a ride like that before.”
– Diana of Ann Arbor, MI, mother to 8-year old,
“My favorite part of the trip was the kids playing with each other while the adults gathered around the campfire and talked and laughed. Several families joined together, including mine, and played cards. It was a mental break, fun filled, relaxing, and we all made new friends.”
– La Cracha of Flint, MI, mother to 13-year old,Tavares, diagnosed with osteosarcoma
“Horsey Call was an amazing experience for our son, friends and family. Ian went through a lot for last almost two years and seeing him happy was such a joy for us. Seeing a horse being his special guest at the party left Ian speechless. He was so happy that he had a chance to get a ride and interact with horse. It made him very happy that he could share this special moment with his friends. During treatment Ian was isolated from other kids to keep him safe and not cause delays that could lower his chances of survival. Being with his friends, playing games, doing craft and learning about horse was just so fun for Ian. We appreciate that Camp Casey organized it so well for us. They set up everything so quickly, entertained kids and brought food and drinks. It was hassle free experience for us parents. We could enjoy this day and this precious moment. Thank you Camp Casey! You are doing amazing job! ”
– Anna of Farmington Hills, MI, mother to 6-year old, Ian, diagnosed with Ewing’s sarcoma
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Stack Up helps U.S. and allied military service members get through deployments to combat zones and recover from traumatic physical and emotional injuries with the power of video gaming.
The CDC Program Evaluation Grant purpose is to evaluate programs that are trying to meet the mental health needs of the Veteran community, specifically focused on suicide and suicide prevention. The grant award will help Stack-Up evaluate the effectiveness of the StOP Initiative our mental health and suicide prevention program and the Air Assault Program where we bring deserving veterans to life-changing video game events, as well as offer professional training and mental health certifications to StOP members.
Congratulation's to the Stack-Up Team! Keep up the great work! KCCO!
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The $25,000 grant was awarded in February 2018, with funds are to be used primarily to arrange flights for veterans, military personnel, and individuals with rare diseases. It costs AFW approximately $50 in staffing costs and communications to coordinate each flight, so the grant will underwrite 500 missions!
To continue to grow our volunteer roster, we exhibited at numerous aviation events throughout our service territory. We also took part in national and regional events including the Meridian, Malibu & Mirage aircraft owners gathering in Colorado Springs, the Cirrus Owners & Pilots Association Migration 18 in Las Vegas, and the National Business Aviation Association conference in Orlando, as well as Aircraft Owners & Pilots Association fly-ins in Missoula and Santa Fe. AFW exhibited at rural health conferences in Washington, Oregon, Utah, and Arizona, as well as the national American Case Management Association conference. Each of these events gives us an opportunity to speak with health care and social work professionals who serve veterans and patients with rare diseases. And AFW is now listed in the resource directories of the Epilepsy Foundation, the Leukemia & Lymphedema Society, and Lazarex Cancer Foundation, for whom AFW will serve as a transpmtation resource for patients in clinical trials. Our colleagues at Angel Flight East staffed a booth at the National Organization of Rare Diseases conference in Washington, DC, and referred West Coast participants to AFW.
In 2018, Angel Flight West's volunteer pilots flew 3,693 missions and our airline partners donated 1,080 tickets for a total of 4,773 free, life-changing flights. As noted in our July progress repo1t, while our passenger database is an exceptional resource, we are sensitive to our patients confidentiality, so while we can't determine the precise number of flights we've completed for individuals with rare diseases, our Mission Operations team (who arrange the flights) estimates over 400 missions have carried patients with rare diseases. In 2018, our pilots flew 137 missions that had been requested by agencies serving veterans, and we estimate that at least another 15-20 had veterans aboard, but not every patient notifies us of his or her military status. We'd like you to meet a few of the people whose lives are better because of you
Thirty-year-old Alanna W. spends many of her days -- and nights -- in bed. When she's awake, she feels like she's in a fog, separated from reality. Alanna has Kleine-Levin Syndrome (KLS), a rare sleep disorder. When an episode strikes, people with this condition can't work, go to school, or take care of themselves. There is no cure. But KLS can be managed with medication. Alanna lives in Bermuda Dunes, a small town in Riverside County, California. Her specialist is at UC San Francisco's Memory and Aging Center. That means an eight-hour drive, until the family found Angel Flight West. In October, we flew Alanna and her mom Diane to her appointment, and we'll be there for them whenever they need us. After the flight, Diana wrote, "Thank you for your generosity and support in providing flights for our Eighteen-month-old Opal has a rare immune disorder, complicated by allergies. But she and her mom June are all smiles on this flight back home from Opal's appointment with a specialist. Afterwards, June wrote: "We are so grateful to AFW and for Pete, Trent, Jim, and Joe for taking us from Bozeman, Montana to Children's Hospital Colorado. A great bunch of Angels!!”
Alex has a rare type of brain tumor. It has affected his vision and he can no longer drive. So when his doctor said he needed treatment at the Jules Stein Eye Institute, he didn't know how he'd get to Los Angeles from his home in Goleta -- until he found Angel Flight West. Our volunteer pilots have provided two roundtrips so far, and two more are already scheduled. When he arrives at Santa Monica Airport, an AFW Earth Angel is there to drive him to and from his appointment.
AFW volunteer pilot Tom Close and mission assistant Paul Singer teamed up with the U.S. Marine Corps and flew a Toys for Tots mission, the cargo hold filled with goodies for the children and Mickey Mouse guiding the flight from Carlsbad to Ramona.
Angel Flight West also filled a very special request from the VFW. Our volunteer pilots flew this group of Gold Star Moms (above) from Sacramento to Bakersfield for a tree planting ceremony at the National Cemetery.
In September, the Biden Cancer Initiative presented Angel Flight West with its FIERCE Award. We were one of 10 organizations and individuals honored at the inaugural event in Washington, DC --selected from more than 700 nominees -for what we do to help cancer patients. We share this honor with Chive Charities because it's your support that makes what we do possible.
Just like the Chive started out with two brothers from Indiana wanting to make people laugh, AFW started out with humble beginnings of a few pilots wanting to use their private airplanes for good. While unlikely partners, I'm so pleased that we had the opportunity to work with you to expand our efforts to serve more people in need. Chive Charities' generosity is making such an incredible difference in so many lives.
Thank you again so much and CHIVE ON!!
Josh Olson, Executive Director of Angel Flight West
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Grace's coach and mentors had asked us to hold off on a custom board for now. We plan to "Frankenstein" her current board with handles and traction pads so that Grace can figure out which set up works for her surfing style. Right now the water is too cold for her to be in for more than 2 waves at a time so it's hard to really see where her groove is, but we should have her board ordered by mid summer!
Grace's coach observed her pushing up on her board, like she was getting in position to stand, so Grace and her coach are excited to begin working on her surfing in the kneel position. Surfing in the kneeling position will give her the feeling of standing up while still giving her the extra touch points her body needs to be able to balance. Kneel boards are set up differently than prone boards, so we are going to add that set up to her FrankenBoard as well. Her coach will be watching her closely to see which handles she uses the most so we can bring the FrankenBoard to the custom shop and they can make the new board with everything she uses in the exact position and add the extra touches like groves for a kneel board or built up traction pads for her hips on a prone board.
Grace will be working with a brand new coach as the water warms up. Mike Spikerman or “Spike" is an awesome guy and has been coaching adaptive surfers for a very long time. He has been friends with Charles (the stoke for life founder) for 15 years and when Charles told him Grace needed a coach he offered to coach her for free!
KCCO Grace and Team! We cannot wait to see the FrankenBoard creation!
Read the original story HERE.
Kenze's story gained national attention after her flash campaign with Chive Charities! She was featured in People Magazine, and was the subject of an 11-minute video on People TV. It was such a fun experience for her and raised a ton of awareness.
Kenze traveled out of state to see a few specialists this past year. Her care team is getting more and more knowledgeable and helpful and she is having some good days along with some bad, but that is to be expected. On good days, she and Makki visit with friends or spend time out of the house training Makki. She made it to the Green Gala again this past year and had a ton of fun seeing everyone! Although her health is still up and down, she continues to raise awareness, help others, and is finishing up high school to graduate in May of 2019! She has been advised by her specialist to take a gap year to focus on her health, although she has already picked her major. When Kenze does go to college, and she plans to major in English Literature and hopes to oneday become a writer.
Read the original story HERE.
"We cannot wait for the Spring to get started on landscaping, the deck will be such a great place to hang out during the summertime! We have named our new ramp “Luke’s landing”. People familiar with St. Louis will understand why, Laclede’s landing in St. Louis is one of my favorite places to go and now we have our own now just outside the front door...doesn’t get any better than that!”
Read the original story HERE.
Chance's new trike made it out of production just in time for Christmas! Chance’s Mom, Amy, shared with us he was ecstatic when we woke up and found his new adaptive Trike under the Christmas Tree! We’re absolutely thrilled to make his wish come true!
Read the original story HERE.
When my new adaptive trike arrived my son & I road for 30 minutes the very first night I had it it, and then we road again the next morning for another 30 minute ride. It brings me incredible joy to be able to ride bikes with my son again, I cannot thank you enough! This quality of life improvement has been the true Christmas miracle.
Anyway, just had to share with you this picture.....from the depths of my heart, thank you so much for the trike!
Read the original story HERE.
"I have Lincoln full time now and he goes everywhere with me every day! I love it, I couldn't imagine life any other way now. He is still "training" right now, but that is only because we are waiting for him to come of age (end of December time frame). He has really made a tremendous impact on my life for the better. I am able to go out and enjoy life again and go to big events with lots of people and not worry about the feelings I would normally get. As a matter a fact, we were on TV (locally) about a month ago, during a halftime show at a football game. I didn't have the slightest doubt about doing any of it, as before, I would have never given it a second thought. We enjoy going out and things like that as much as we can, but of course, we are in Iowa, and there is snow everywhere now, so we stay in a lot more now. But everyone at work has welcomed him with open arms and its truly amazing! He has helped me through all the crazy, stressful times at work lately and just seeing his face perk up and tail wag the second I move in my chair is all I need! He truly is a miracle worker!!”
Read the original story HERE.
Currently, Ivan is in the hospital at Vanderbilt Children's with a paralytic ileus, we were hopeful for just a few days in the hospital but we are coming up on a week. This is such a slow process and doctors have said even if he miraculously turned around the next couple days, which they don't foresee, they would expect him here probably another week at least. Unfortunately that means he will be spending his birthday on Wednesday in the hospital and there is a chance he may be here for Christmas, but we sure hope not. Ivan will be turning 13 this week. Christmas and birthdays are just special days on the calendar that mean the most when celebrated with family, but the most important part of it right now is that he is healthy. We can always spend time together with family later, but it does make us a bit sad to be away from home. As much as I want us to be home now, right now until we get him stable, I think he needs to be here.
In spite of all this, I just want you to know how thankful we are for your gift of the van. We have been so blessed and my words can never Express how thankful I am. There are no words to describe how it feels to be able to drive your sick child to the hospital and not be afraid every second your van will break down along the way. That safety and peace its given me are beyond words. For Ivan, he smiles every single time he gets in the van. He absolutely loves it and still every day asks to go bye bye.
I will forever be thankful to the staff and Chive Charities donors who made this happen!
Ivan recently met some of the Nashville Predators and members of Kings of Leon and Lily Aldridge in Seacrest Studios here at Vanderbilt Children's hospital. Ivan smiles every day in spite of being in the hospital. His smile lights up our life!
Thank you all! Merry Christmas!
Cheyenne, Ivan’s Mother
Birthday Cards can be sent to Ivan at:
Vanderbilt Children’s Hospital
Ivan Asher, Room #8531
2200 Children’s Way Room
Nashville TN 37232
Read the original story HERE.
Travis County BROWN SANTA is a community service program of the Travis County Sheriff's Office and the many sponsors and volunteers who make it happen each year. This program provides assistance to underprivileged children and their families in Travis County. They have kicked off their 37th Holiday Season and are in the peak of the busy season.
Mary the Chairman for the Brown Santa Program shared that "We are at are highest peak of our season and the program is busy and running smoothly. Here are a few photos of our volunteers this year."
Keep up the Great work Brown Santa!
Read the original story HERE.
Alexa’s Mother, Ashleigh shared that "Alexa has been making great strides in therapy, which is a huge blessing!" All of Alexa’s hard work has paid off! She recently was able to sit up unassisted in a rocking chair for her Christmas, Alexa sat up for a whole minute, this is huge progress for Alexa!
Ashleigh shared that “Alexa's personality is starting to come back, which is huge! We’ve missed her smiles, squeals, and general troublemaking. She’s growing quickly and is getting quite heavy. She’s 5, almost 6, which is crazy especially since her original prognosis gave her a life expectancy of 3.”
Alexa did have a Vagus Nerve stimulator put in last year in October which sends regular mild pulses of electrical energy to the brain via the Vagus Nerve. It’s been just over a year since Alexa had the Vagus Nerve Stimulator put in and her seizures have generally become significantly better. Alexa’s seizures are now shorter and she doesn’t stop breathing as much, and she is more alert.
Read the original story HERE.
In late October Aubree underwent several medical procedures including an MRI, EEG, and a muscle biopsy. While Aubree and her family are eagerly awaiting the results of her recent procedures, she has been keeping busy with her newest passion, riding her new adaptive tricycle and singing along to her favorite song, Baby Shark. Aubree’s Mom, Desiree shared with us that Aubree had a medication change to address her increased seizures and that she has responded well.
We are so happy to hear that Aubree’s personality has begun to flourish and she continues to do well!
Read the original story HERE.
Kellan’s Mom Misti shared this special message with us:
"Today is always a little more emotional because on top of it being PKS awareness day, it is also this day exactly 5 years ago that Kellan was diagnosed with this extremely rare syndrome."
PKS is caused by the presence of an abnormal extra chromosome. Children with PKS have extremely weak muscle tone in infancy and display facial features that are common to the syndrome including a high forehead, broad nasal bridge, and a wide space between the eyes. 99% of children with PKS falsely test normal for chromosomal testing because it is a mosaic syndrome however It can usually only be detected by cheek swab or skin biopsy.
Read the original story HERE.
Alani is growing and doing great! She is currently going to a Charter School where she attends Pre-K. The computer that Alani received from her Chive Charities Grant has been the greatest gift for her, she is able to do all her school work with the greatest of ease and the thermal suit she received as a part of her grant has allowed her to participate in so many summer activities this past summer. The thermal suit helped Alani maintain her body temperature preventing serious illness from the uncontrolled spikes and drops due to her total absence of body fat.
Alani’s Mother Rachel shared with us that she was recently declared a Med-Hero for the Month of December 2018 and will be featured in an upcoming article titled “Oklahoma Mom on a Mission” in USA Today! Way to go Rachel, you are a rock star!
Read the original story HERE.
Taytem will head to Minnesota this summer for hip surgery on both of her hips, she suffers from sever hip dysplasia although you wouldn't know it. Taytem’s Mom Chamonix shared with us that “she just keeps going and never stops! She is one tough cookie! We will be gone for at least 6 weeks for her surgery, possibly more depending on her recovery and how well she bounces back but knowing her she will bounce back pretty fast! Oh and by the way Tay still LOVES her bed and refuses to sleep any where else!! Not even with Mom in her bed!!”
Read the original story HERE.
"We are doing really well, so well that this has been the longest Mason and Lizzy have gone without needing an inpatient stay! Yay!"
Mason and Lizzy are enjoying school and staying heathy. In their free time they have been busy working on a kindness initiative in their community. They are focused on providing care packages with pajamas to local special needs families. They recently provided over 200 pairs of pajamas to the BMT unit at Cincinnati Children’s!
We love this display of kindness and giving spirit of the Clemence Family! Keep up the great work!
Read the original story HERE.
Read the original story HERE.
As a family we had a goal to travel to Florida, in our new accessible van. That goal was met 1 year after receiving our van from Chive Chive Charities. We all enjoyed Universal Studios and Alyssa and I even met up with fellow Chive recipients Tyree and his mother Cassie. Unfortunately the trip involved an unplanned 2 week hospitalization for Alyssa due to the flu. Her dad & siblings flew back to home, while Alyssa recuperated at a local Children’s Hospital.
The last nine months have brought on an additional two hospitalizations for back surgery & five for respiratory illnesses. In between Alyssa has been out and about to the beach, chillin’ at the pool, visiting museums and historic sites like Valley Forge.
Through Gods grace, support from family, our friends and the Chive community Alyssa remains strong in spirit and body.
Read the original story HERE.
Faith is quickly becoming a busy pre-teen. She recently participated in Cheerleading camp and love it! Faith enjoyed chatting with the other cheerleaders and cheering on the football team. Faith’s Mother Gina shared that "Faith does not see herself in a wheelchair or with a trach or a disability. She probably will never be on a varsity cheer squad but she was last night. And she was so excited to see her friends and live our her cheerleading dream.”
Now that Faith is older and maintains a hectic schedule, Faiths family is working to fundraise for a Auto Access Seat for her. Gina shared that "This seat can go to ground level so the person can transfer out of their chair to the seat and automatically go back into the van. This is our dream and it would make things so so so much easier for all of us. We have appointments, therapies, and trips to the stores but transporting Faith into the van is a struggle. And honestly being that Faith is 11 and it’s embarrassing to her that basically we have to have so many people grab her to get her into the seat. I have to admit I have cried because I can’t do it anymore and I don’t want her to feel like she is burdening me because I am her mom and that’s what I am here for. I am happy she wants to go and participate in therapy or social events now. Just getting her in and out of the van is so hard. That’s why I am started to fundraise for her Auto Access Seat.”
Read the original story HERE.
Alex passed in her parents embrace, listening to her farewell song. Alex hung on to the end and expired as the song ended. Alex’s father Sean shared, "She is now free from her earthly limitations and flying free planning mischief across the universe playing her music so loud healthy stars go super nova.”
Our hearts go out to her family and friends during this difficult time.
Read the original story HERE.
Hiatham continues to fight but he is losing some of his strength. In addition to increased seizures, Haitham is also battling depression and feelings of isolation as his disease continues to progress. Earlier this year, Hiatham was seen by specialist at UCLA who continue to research effective mediations and treatments for Lafora patients, Hiatham remains hopeful that new medications and upcoming clinical trials will prove helpful to him in the near future.
However, Hiatham continues to live on the first floor of his home and struggles to find comfort. Hiatham’s Mother, Azeza shared with us that she is desperately searching and fundraising for a ranch style wheelchair accessible home that will allow her to better care for Hiatham and provide Haitham with a better sense of normalcy.
We'd love to flood their mailbox with well-wishes and happy notes! If you have a moment and a spare stamp, you can send cards and letters to:
Hiatham Breadily
2754 Hikone Dr.
Ann Arbor Michigan 48108-3233
Read the original story HERE.
Read the original story HERE.
Cash recieved a Bigfoot RC truck by the Magic Wheelchair organization.
Magic Wheelchair is a nonprofit organization that builds epic costumes for kiddos in wheelchairs — at no cost to families. Their vision is to put a smile on the face of every child in a wheelchair by transforming their wheelchairs into awesomeness created by their our hands and their imaginations! Cash’s creation was created by a local chapter lead by two high school teachers and the students at Lathrop High School.
Kids helping kids, yes! Keep on Crusin' Cash!
Read the original story HERE.
Luke’s family made a big move in June from Texas to their home state of Pennsylvania to have access to better services and supports for Luke and his brother Adam, and to be closer to family. Since the move, Luke and his family enjoyed a boat ride with his Grandparents, had a long weekend at the beach, and Luke and Adam each got a kitty!
Luke has been enjoying not having to go to school every day and has been staying home with his mom and is looking forward to doing some volunteering in the community. Luke and his family are hoping to find some bikes so they can take family bike rides when it warms up again. They are also hopeful that it will snow again, but for now, they are enjoying the changing colors of the leaves.
Luke’s Mother, Anita shared that "Luke is excited to fill his time with new activities to do in our area. Thanks to Chive for providing our van, we can easily do this kind of thing."
Read the original story HERE.
"I just wanted to let you know once again how grateful we are for the Chive Charities donors and what they been able to do for us. We picked up the van over the weekend and have only had it home a few days now, but it’s safe to say that we love it! Especially Henry. It has been fun being able to take him places with ease! It sounds cheesy but it really is a dream come true! Here is a couple pictures, the first is of the first time all the kids piled in the van. And the second is of Henry’s first trip to Target with his power chair.. talk about freedom, he took himself straight to the toy isle!"
Read the original story HERE.
Belle’s Mom Laurel shared just how life changing receiving the van has been for Belle:
"Wow, this van. Or should I say, the Belle Bus. It has beyond changed Belle’s life & our lives. It has been almost 2 years since we received it. There isn’t a day that goes by that aren’t beyond thankful for this ultimately life changing gift. The Belle Bus represents so much love for our family. Not only does this van allow for an easy transition from home to appointments, therapies & follow ups it represents freedom & comfort for our Belle. We have the ability to just load her up in her wheelchair & GO! No unloading her chair, reattaching supplies, wheelchair parts, and taking Belle in and out of a car seat. Most importantly it provides Belle with the safety to ride comfortably. Belle has such a rare and extreme form of muscular dystrophy that she is prone to fractures. When she was only 18 months old she suffered a femur fracture from lifting her in and out her car seat. So, Chive charities thank you again for this life changing gift. It has blessed our family beyond words. We are in such a transitional point in our lives that we would have never been able to afford this van on our own. Thank you. Thank you. Thank you. I wish I could say more but know that this van will forever be loved on and appreciated every time we ride in it. “
Read the original story HERE.
The grant funds are to be used primarily to arrange flights for veterans, military personnel, and individuals with rare diseases. It costs AFW approximately $50 in staffing costs and communications to coordinate each flight, so the grant will underwrite 500 missions! Our Director of Outreach and our Outreach Program Coordinator have been identifying agencies and organizations that specifically serve veterans and/or individuals with rare diseases. So far, we've made new connections with the following groups:
Return to Work, as the name suggests, prepares veterans to re-enter the civilian workforce by providing personalized counseling, vocational evaluation, and referrals. They featured AFW in their newsletter and blog.
White Heart helps veterans through financial assistance and a variety of support services.
True North help teens and young adults with cancer find direction through connection after the very disconnecting experience cancer can bring.
Lazarex offers families assistance with costs for FDA clinical trial participation, identification of clinical trial options, community outreach and engagement.
DKMS recruits bone marrow donor, provides funds for donor registration costs, and offers patient support services.
For the Win gives kids with life-threatening and rare conditions the chance to become their favorite hero. They bring children from all over the country to Hollywood, where make-up artists and costume professionals transform them into the hero of their choice. And they each get an official movie poster and film trailer — of themselves!
Between January 1 and June 30, our volunteer pilots and airline partners completed 2,209 AFW missions. While our passenger database is an exceptional resource, we are sensitive to our patients confidentiality, so while we can't determine the precise number of flights we've completed for individuals with rare diseases, our Mission Operations team (who arrange the flights) estimates over 200 missions have carried patients with rare diseases. During this six-month period, our pilots flew 58 missions that had been requested by agencies serving veterans, and we estimate that at least another 10-15 had veterans aboard, but not every patient notifies us of his or her military status.
It's amazing how a single flight can change a family in crisis. Through your compassion and generosity, Angel Flight West is able to help patients like Jose G. of Reno. The 36-year-old Jose suffers rom Pectus Carnitum, a malformation of the chest, and Marfan Syndrome, a genetic disorder that affects the body's connective tissue. Due to complications related to these two diseases, Jose experienced a stroke that left him mostly paralyzed. His wife Arlene has become his full-time caregiver and is not able to work outside of the home. When Jose needed to see a neurologist at Stanford Medical Center in Palo Alto, the family wasn't sure they could seize the opportunity. Not only were they unable to afford a commercial flight, it would have taken a serious physical toll on Jose in his complicated medical condition. Fortunately, his caseworker in Reno knew about AFW, and made a call that changed Jose's life. Our pilots flew Jose and his wife round trip to access a top-ranked specialist. And our pilots will be standing by when he needs them again - all at no cost to the family. As a private in the U.S. Army, 23-year-old Nicholas P. was deployed to Afghanistan in 2004. An IED explosion shattered his shoulder, and years of therapy and multiple surgeries didn't bring relief. Then he found a specialist at Oregon Health Sciences University in Portland. But, unable to work, Nicholas didn’t have the resources to get there from his home In Enterprise, a small town in Eastern Oregon, a seven- hour drive to the hospital. But for our volunteer pilots, it's a breezy 80-minute flight. Nicholas had his surgery and is, as he puts in, "in full recover mode.” Our new partnership with White Heart is already bringing results.
We flew eight veterans from to a White Heart camp in Wyoming. The campers had flown to Salt Lake City from all across the country and our pilots flew them to the retreat in the Wild River Mountains for a week of therapy and recreation. A week later, we flew them back.
We've included an "art-full" email from White Heart Executive Director Ryan Sawtelle because his words of gratitude belong to you, too:
Chive Charities' generosity is making such an incredible difference in so many lives. While I was personally introduced to The Chive years ago through funny blogs and cat videos, a background and Northern Indiana roots shared with the Resig brothers, and Bill Murray, I continue to come back because of the difference you're making in the communities you serve. We are so proud to partner with you on those ends and will continue to support your efforts whenever and wherever we can. Thank you again so much and CHIVE ON!!
Read the original story HERE.
He was admitted to the hospital to address a feeding tube issue and shortly after experienced respiratory distress. After he was intubated three times, Griffin received a tracheotomy. He’s doing much better now and Griffin will continue to rest and recover in the hospital until home health services are set up for him at home. In the meantime, Griffin is working on getting that signature Griffin smile back!
Sending much love to Griffin & Family from your Chive Charities Family! KCCO!
Read the original story HERE.
Ginny’s Mom, Bethany shared that “She has never sat up without support or someone holding her, this is the best fall break ever!" Ginny has worked so hard for this moment, her countless therapy appointments and the Chive Charities grant that provided her with a Wheelchair, Activity Chair, and Stander, have helped her to become an unstoppable little girl!
KCCO Ginny!
Read the original story HERE.
When Lauren was very young, it became apparent that music was a great love of hers. Lauren grew up listening to Raffi with her older sister Katie and as she got older, that never changed. Lauren’s love of Raffi has been constant and she recently had the opportunity to see him live in concert!
Lauren’s Mom, Rachel, shared that “The day of the concert, Lauren was so excited. The whole car ride she smiled from ear to ear. Lauren enjoyed every minute of it, smiling and just looking at me like, wow, it’s really him!”. After the concert, Lauren had the chance to meet her idol, and when Raffi saw Lauren, he started singing Baby Beluga to her and she was in love! Her smile was a million watts!
Read the original story HERE.
Josh recently participated in Make-A-Wish’s 2018 Walk for Wishes walk, a fundraiser that celebrates thousands of wishes that have already been granted while raising fund for future wishes. This is Josh's 5th year participating! Josh's mom Marcie shared that enjoys walking on behalf of other children, this kid really knows how to Pay It Forward!
Josh has also been busy visiting lots of new places in his new van, that he has named “KeKe”.
Josh has been having a blast visiting the Zoo, going to share family meals at local restaurants, attending his brothers Football games, Church, and helping shop for Groceries at the Store. Josh even played hooky last week and drove to visit his Grandmother who lives 45 minutes away. Keep on Rolling Josh!
Read the original story HERE.
More than 1,300 have died and it is reported that over 50,000 people are homeless. ShelterBox is deploying the Response Team to help people made homeless by this disaster. Access to the affected area is severely restricted and the full scale of the destruction and damage to homes is not yet fully understood. Fortunately, ShelterBox already has response teams working on the Indonesian Island of Lombok. Their teams have been in Lombok for the last month helping families recover from the 6.9 magnitude earthquake which hit in August and left 20,000 people homeless.
Shelter Box is in contact with the Indonesian government, partner disaster management organizations and Rotary colleagues in Indonesia to understand how they might be able to help Sulawesi families made homeless by the disaster.
Read the original story HERE.
Carson's Dad Chad shared that "it has helped him a lot with his fine motor skills and a ton with his confidence.” Carson's motor skills have improved so much so that he has been able to take tennis lessons and play Baseball in a Miracle league. Chad also shared that "We believe that he has really started to blossom and has been willing to take more chances and do things such as the tennis and baseball because he is more confident in himself and a lot of that is because of the amazing people at Chive Charities and the amazing donors.”
Carson has a big trip planned to Orlando, where he will get some special 1-on-1 Jedi training at Disney thanks to the Make-A-Wish foundation. May the force be with you Carson, we can’t wait to see those Jedi moves!
Read the original story HERE.
He passed in the comfort his home feeling nothing but the love and warmth of his family. His energetic and loving spirit shined everywhere towards everyone he knew. We will forever have a missing piece of our hearts. Rest in Peace Alex.
Read the original story HERE.
She recently was able to donate her hair this year-which was amazing since she had lost it hers when she had brain surgery years ago! She is now proudly sporting a very stylish “grown up” cut.
Ashlyn also welcomed a couple Llamas to her farm this year and has loved being a new llama momma.
Ashlyn had foot surgery over the summer, which required seven pins! Her Mom and Dad were nervous wrecks but as always Ashlyn handled it awesomely and now has a super straight foot that can bear weight. She continues to use her eye gaze communication device and getting better at it everyday!
Read the original story HERE.
The CTX Ability Sports Kickball Season has started and they wanted to extend an invitation to all Chivers to partipate! CTX Ability sports provides year round sports and activities to children with disabilities, their siblings, and parents free of charge for total family inclusion.
Read the original story HERE.
"Like all Chive Charities recipients, we lack the ability to adequately convey HOW VERY HIGH our gratitude is. I’ve condensed it down to two words: infinitely ineffable, meaning beyond calculation and beyond language. In one of your videos a darling little girl in a wheelchair enthusiastically expressed it well: You not only made my life 10% happier, you made it a million percent happier! My heart was brim with gratitude when we were presented my Chariot at United Access (a.k.a. Performance Mobility)! Three years previously Richard had taken me there. When asked, “How can we help you?”, he replied, “I’m looking for a chariot for my queen.” All too soon it was evident I could no longer be safely transferred from wheelchair to our current van. Had Chive not chimed in I would be a shut-in. Such a thought makes me shudder. The rescuing reality of Chive Charities so generously granting us the gift of liberty from confinement makes me jubilant. I am unable to lift my arms, and I cannot do the splits or back flips, nor can I do cartwheels or pyramids, nevertheless I can do a whole-soul cheer for Chive!
My wheelchair was named Merrily by a friend. Her mother embroidered a sign to put on the back of it: Merrily rolling along, forever grateful ♥ Grateful for God’s profound power. ♥Grateful for the miracle of being able to stand upright a few minutes each day with the aid of my daddy’s walker. ♥Grateful for the incredible generosity of chivers’/Chive Nation/Chive Charities. ♥Grateful that because of their generosity I am not homebound. Outings revive me! Here’s to Chive Charities: Jumping for joy! Thanks for the revive, Chive! Not being able to travel to be with our children in their homes or to visit other relatives and friends has been a source of sadness, seemingly inconsolable at times. Grateful for positive perspective and electronic connection that mitigates the distress of not being able to be where the heart yearns to be.
My chariot changed that! It gave impetus to my determination to attend our grandson’s graduation. It had been more than three years since our last away from home trip. We deliberated “Leap of Faith” or “Lunge of Foolishness.” The anxiety-free access of entering and exiting the van was a huge factor in taking the Leap! How wonderful it was to travel over 700 miles round- trip from Sandy, UT to Boise, ID. There we were – live and in person – as he delivered the best ever valedictorian speech! As much as that 700-mile journey meant to me, it is likewise so very meaningful that I am able to frequently do short trips, even two-mile weekly jaunts to church. Being able to do so refuels my fortitude tank, giving me enCOURAGEment to deal with the rigors of reality in a way that is pleasing to God and helpful to people."
Read the original story HERE.
He has been a busy little boy, earlier this year he visited the Smokey Mountains in Tennessee for Spring Break and took a couple small road trips over summer. Kellan is also learning to STAND independently, which is very exciting! Kellan also started Kindergarten this year, Keep Standing Tall Kellan!
Read the original story HERE.
Jamie’s Mom shared that: "Jamie has been doing well and he just started the 4th grade this year. He is brilliant so this momma has no worries! He still enjoys his therapy spa to help his pain which has unfortunately become more frequent but we are working with doctors to figure it out. Jamie's heart aneurysms are still the same size and he will be having his heart catherization this fall to better evaluate them. Otherwise he remains "healthy” and in happy spirits!
We think of Chive Charities often and how much they helped us through a very difficult time after Jamie was sick. His illness was fairly new to us still when we applied for a Chive Charities Grant. We take his defibrillator everywhere we go and Jamie used all his strips for his PTINR machine (reluctantly of course) that was a lot of pokes to his fingers. One good thing out of all those finger pokes is he is getting calluses and that is helping him while he learns to play guitar. And of course his favorite thing to do is get in his therapy spa to help his legs after they have been pained all day.
Read the original story HERE.
The Hudson Fire Department shared their latest improvements with us, including: the new bathroom that is now handicap accessible, new appliances, new windows, new man doors throughout the building, and new bay doors that work 100% of the time! The Fire Department got rid of their big box furnaces that hung down from the ceiling and a furnace unit was installed and ducted throughout the building. A new roof with absolutely ZERO leaks was installed along with a new training platform on the roof that will serve as the location for future ladder based trainings as well as protecting the building from dings and bangs on the roof during such training.
Sadly, the attic had fallen down on top of their fire trucks but, fortunately there was no damage to the trucks and a new ceiling was installed with new low cost LED lighting. The Hudson Fire Department was happy to share the almost final product of the new improved Hudson Fire House that all of the hard work of Chive Nation helped build.
"The Hudson Fire Department is beyond thankful for all the hard work Chive Charities and Chive Nation has done to make this all possible. You all have made Hudson Fire and the Town of Hudson 10% better!”
Job well done, Chive Nation! KCCO!
Read the original story HERE.
Read the original story HERE.
Gavin’s surgery to reduce the ball of his femur in the hip joint and re-angle it away from his pelvis to allow the bone to regenerate properly was performed by the team at Scottish Rite Children’s Hospital in Dallas, Tx just last week. Gavin was able to sqeeze in a quick trip to the Dallas Cowboys locker room before his surgery and was thrilled to snap a pic in front of Cooper Rush’s locker, Cooper had also visited Gavin just before his surgery. Gavin is now back home in Michigan and on the road to recovery. Gavin is able to get around using his wheelchair and actually using a walker around the house.
Gavin’s Mom Kim shared this note with us “He is such a champ and I am so very proud of him, nothing will stop this kid. We just can’t say thank you enough!”
Read the original story HERE.
Denver’s Dad, Josh shared with us that “Denver is doing great! He’s such a happy kid and we are blessed by his room daily. He still uses it daily and has such a great relationship with his sensory room. Denver knows when he needs to use it and it continues to be such a blessing to our family.”
Denver had a blast at Camp ClapHans this summer. Camp Claphans is a residential summer camp for kids with special needs, where Denver was able to make new friends and enjoy a plethora of activities including archery, canoeing, fishing, horseback riding, camp fires, and swimming!
He also enjoyed a vacation at Disney and spent plenty of time relaxing in the hammocks (his favorite thing) at the resort. Denver is now gearing up for his first year of junior high/middle school and is looking forward joining the school band and playing the drums.
Read the original story HERE.
Ricky rode his handcycle more than 1500 miles to raise funds to support other veterans struggling with post-traumatic stress disorder (PTSD), traumatic brain injury (TBI), chronic pain, self-medication and insomnia. Ricky will travel approximately 130 miles a day for two weeks.
Ricky’s journey began on Monday August 13th in New York City and ended on August 25th in Penellas Park, Florida. You can see more about his upcoming epic adventure here at www.raleyroadtrip.com.
Read the original story HERE.
Read the original story HERE.
Sierra graduated from high school in June and has resumed her physical therapy regime at Journey Forward after a brief break to focus on her studies. Journey Forward is a non-profit organization dedicated to bettering the lives of those with spinal cord injuries or disability. Sierra travels twice a week to her appointments and has been working extremely hard to increase her strength. She is now able to crawl without assistance and can peddle a stationary bicycle forward and backwards! This takes a great deal of concentration and core strength that Sierra has been working on for many months now.
Susan, Sierra’s mother, sent us this very special message: “The grant from Chive Charities has been immeasurable in terms of assisting our daughter's recovery from spinal cord injury. It's a painstakingly slow process but we have every hope of her full recovery.”
Read the original story HERE.
"I'm excited to let you guys know that I finally got my service dog. Her name is Nova. I've spent the last week training with her in Indianapolis and we just passed the public access test this morning. I'm going back to school next month, so I'm really thankful to have her. I cannot thank Chive Charities, and all the awesome doners enough for making this possible for me. "
Read the original story HERE.
After months of training, Piper is now ready to assitant Anastasia with her daily needs. Anastasia and her family are so glad to have Piper home, especially after she detected that Anastasia was having a seizure during her second night with Anastasia. We are so excited to watch this dynamic duo in action!
Read the original story HERE.
Danielle has been struggling with food consumption lately and she had a scary visit in June to the hospital but after receiving a back brace and some time to heal, she recovered wonderfully. Her recovery went so well that she was able to travel to the beach several weeks later for some fun in the sun with her family! KCCO Danielle!
Read the original story HERE.
Izzy’s schedule has been filled with Girl Scouts meetings, swimming lessons, school and all her appointments and therapies. Izzy has learned how to write her name and has started to read this year! She also participated in an all-abilities triathalon last August and in the Special Olympics in September. This summer she’s been busy with camping, swimming, gymnastics and hippotherapy!
Read the original story HERE.
She been to the hospital a few times in the last month but she is really improving. She actually met a new milestone and is rolling over on her own. Kaitlyn and her family were able to go on a road trip to Miami FL in March to visit with family and also went to Disney World in December!
Kaityn’s Mom, Merily shared "It was a great trip for our family. We also have enjoyed attending our local Maryland Chive get togethers! They are like our extended family.”
KCCO Kaitlyn!
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The twins are 16 years old now and growing like crazy. Everyone has been healthy and we’re very thankful for that. Our van is amazing and has really made traveling safe, comfortable and convenient for our family. Zakery and Lexi love getting out and keeping busy. We were able to take a short trip over spring break and attend many events around our area. If it is running errands, going bowling, getting ice cream or just going for a drive, the van and lift make it so easy for us. We are very thankful for everything Chive Charities provided and happy we are part of this community.
The Burgdorf Family
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Alex has been busy since receiving the wheelchair accessible van and has enjoyed being able to get out and about. He recently was able to go on his first ever jet ski ride with RISE Adaptive Sports! Alex also enjoys attending the weekly meetup for teens at his Church and playing baseball. Alex played baseball this past Spring with the Miracle League, an organization that provides children and adults with disabilities the opportunity to play baseball, and Alex is looking forward to playing again during the upcoming Fall season!
Alex has also been participating in water therapy which has helped relieve his back pain. Alex’s Mother says that she has seen the improvements in Alex since starting water therapy and that Alex will have to have a high risk spinal cord surgery but due to the high risk for complications and increased chance that the surgery may cause progressions in his Vanishing White Matter Disease they are holding off for now. Until then- Play Ball Alex!
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Oakley is excelling in his home-school program that offers a tailored education and provides flexibility to accommodates his unique needs.-Sarah also shared that Oakley is doing okay health wise considering he is still battling kidney disease as well as his prune belly syndrome, but he continues to keep his smile. "He is such a tough kid and a huge inspiration" say Mom Sarah. Oakley will be scheduled for additional surgeries soon but for now he is enjoying his summer, KCCO Oakley!
Read the original story HERE.
Over the last several months, the team has traveled from Alaska to Argentina to Texas to provide training to various rescue groups on how to extract an injured person using specialized tools for very unique scenarios!
The Puyallup Extrication Team also hosted their 13th annual PXT Auto Extrication Class earlier this year in Seattle and taught over 50 students from several surrounding fire and rescue agencies how they can effectively and safely respond to bad car wreaks.
The team sent a special note to our dedicated donors, “We thank you for your continued support as we continue to provide extrication training; locally, nationally, and internationally.
Great work team, KCCO!
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Emma’s health has declined yet she managed to have a few good days a week and is able to enjoy an occasional walk. Emma’s immune system has weakened, and it has been a rough 6 months for her and her family. Emma’s family is so incredibly grateful that they no longer have to worry about transporting her, Emma’s mother Joy, says “Chive Charities helped my sanity an Emma’s health”. Shortly after receiving the van, Emma had a fecal transplant to cure her Clostridium Difficile or C. Diff that she had 3 times over the course of the last year. Emma is now 11 and will be starting Therasuit therapy soon to help her meet her functional goals.
Stay Strong Emma, we are all cheering for you! KCCO!
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Katy, the kiddos & I came to Australia for a groundbreaking leg surgery. I have never had a good fit with a traditional socket that operates off of suction and requires a stump leg that is in fairly good condition but after almost 2 dozen sockets, I decided to search the internet to see if there are any other options out there. After almost a year of looking I found a procedure new procedure “osseointegration.” The procedure requires a titanium rod to be inserted into my left femur, and a couple inches of the rod sticks out of my skin where a "quick connect” fitting is placed. Then the prosthetic knee snaps into place on it, no more chaffing lotion, no more multiple liners, just a simple “click” and the prosthetic is on!
Everything sounded so great, except for the high cost for the procedure and the travel expenses associated with traveling out of the country but after speaking with other patients who had undergone osseointegration, I was sold! Every patient I talked to all had the same thing to say, “it was life changing” and “this is the closest to having a real leg” and “no more back & hip pain!”.
I just wanted to tell you guys (and the Chive Nation), thank you for everything you guys have done for me and my family.
You can follow Billy’s progress and fundraising effort on Facebook at the“Build Hope for Wynne Family” page.
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Fifthteen years ago, my friend and Founder of The Greatest GENERATIONS Foundation, Timothy Davis embarked on a mission to bring WWII veterans (and now Vietnam as well) back to the battlefields on which they fought.
It’s been a long, but rewarding, road, though it hasn’t always been easy. As the veterans aged, Timothy realized that to best serve these men, he needed a custom-built facility to accommodate their needs to use as a base camp for our future programs; a place that not only would give them the five-star experience that they so richly deserve for their sacrifice, but one that would preserve and perpetuate their legacy for generations to come after they’re gone. A lofty goal if ever there was one.
He officially accomplished that goal with 101st Airborne D-day veteran Joseph Reilly and 29th Infantry veteran Steven Melnikoff cutting the ribbon on La Maison de la Libération (house of liberation) in St. Marie du Mont, in Normandy.
Formerly the German headquarters for the Utah Beach region Pre-DDay and then headquarters for the 4th Infantry Division, the house is like no other in Normandy. It’s been completely renovated to accommodate our veterans, including custom bathrooms, a chef’s kitchen and even an elevator!
Even more incredible is the original German artwork on the walls of the ground floor dining room and salon. It’s the only such artwork found anywhere in France and has designated the house as a national historic landmark. We are professionally restoring and preserving it to the high standards of French law.
It was an emotional ceremony for Timothy, his Family, and the veterans, attended also by the architect, many of the men who worked on the project and local members of the community, including the mayor. We planted a beautiful Korean dogwood tree in honor of Mr. Reilly, popped copious amounts of champagne and invited anyone and everyone to tour the facility.
Over the next three years (until the 75th anniversary of the end of the war) Tim’s goal is to bring 750 WWII veterans through for week long programs. When not in use for the programs, the facility will be free to use for veterans of WWII and their families. Once the vets are gone, the house will become an educational center that will reward outstanding teachers who demonstrate a passion for preserving the legacy of what our veterans accomplished and sacrificed, with free access to the facility for themselves and select students, as a base camp to bring WWII history to life. It will be an experience like no other in the world for our students and teachers.
Enjoy the photos and stay tuned as our initiative to bring the 750 back begins in earnest later this summer!
Read the original story HERE.
Chris shared with us that Alta his first service dog, struggled to form the necessary bond between service dog and owner so Alta was adopted by her forever family where she has been thriving. Chris again worked with Mountain High Services Dogs who found him the perfect match, Gibbs! Gibbs is a Labradoodle, and when the CEO of Mountain High Services Dogs went out to test the puppies, she saw Gibbs sitting there very calm while his brothers and sisters were going crazy and knew Gibbs was the dog for Chris! Then when she saw Gibbs had a white goatee on his otherwise black furred body (Chris has a goatee too), we really knew we found a match!
Gibbs is still a puppy and has a puppy attention span at times but is excelling in training. Chris shared that “We go everywhere together, Gibbs started coming to work with me as soon as I got him. Gibbs is 52 lbs now as of his last vet visit, so not sure how big he will get but Gibbs can get as big as he wants, he loves me and I love him.”
We are thrilled to hear about this perfect pair!
Read the original story HERE.
The clinical trial he was in stopped last Summer and he hasn't really had any treatment since then. Jared’s parents shared that they were a bit worried with him stopping cold turkey but he has responded well. Jared really enjoys the chill out chair, it seems to sooth him and keep him in a great posture instead of that W sitting he loves so much. Jared was able to get out on one of our warmer days to enjoy the bike. Jared also got to bring the bike to school so he use it during gym time. Ride on Jared!
Read the original story HERE.
Hiatham is hopeful that within the next 12 months he will be able participate in a clinical trial at UCLA for Lafora patients. He is also on a new medication, Metformin, and is hopeful that it can slow down the disease process. The wheelchair van has helped Hiatham’s family get him to his medical appointments with ease and continues to make Hiatham’s world 10% happier!
Read the original story HERE.
At school, Cooper has made fantastic progress, he has learned how to scoot across the floor so he can engage with others in the classroom. Even though Cooper is unable to walk and talk, he finds other ways to get around and communicate. Cooper likes to give high-fives and enjoys laughing and resisting giving high-fives to play with some of his teachers and friends. He is meeting many of the goals that have been set for him and is really developing a joyful and easy-going personality! At home, Cooper has been working on standing and crawling. He now has a therapy swing in the lower level of the home that he can access with the elevator from Chive Charities.
Read the original story HERE.
Alayja underwent a back surgery called a spinal fusion that was extremely difficult but she pushed through her pain like a champ. Alayja was fatigued from the numerous doctor’s appointments she attended but she managed to muster her strength to start high school and attend her winter formal. Alayja you are stunning!
Read the original story HERE.
The tremendous Tampa Bay Chivers organized a birthday celebration at the Pottery Patch where Dior could display her crafting skills for all. Dior spent the day surrounded by her family, friends, and treasured Chive Nation. All the kids, and yes even the adults, had a great time making their personalized pottery pieces, enjoying cake and opening presents. Dior chose to paint a crown which was fitting since she was the birthday princess. Happy Birthday Dior!
Read the original story HERE.
"It has been so awesome for me, it has saved my aching back! I do not have enough words to express our gratitude. Charlie gets in and out with minimal help. He loves to open and shut the doors for us! The provides Charlie with independence that he did not have before and I can see the look of pride and accomplishment on his face"
Charlie has ventured around the state of Indiana visiting family and creating new adventures, including his school dance!
Read the original story HERE.
Cash is doing great, he celebrated his EIGHTH birthday in December and he just hit the one-year mark of receiving the first and only treatment for SMA. Cash has been doing lots of Physical therapy and has been showing some great improvements in strength and stamina! It's very exciting to watch his body gain strength and to see how proud he feels when he does something new!
Read the original story HERE.
Sophie was in the ICU earlier this year after her lungs collapsed, it was a scary time for her family and they almost lost her but Sophie proved yet again how resilient she is! Sophie made a full recovery and several month later she was able to enjoy a well-deserved vacation at Disney Magical Kingdom with her family.
Read the original story HERE.
Ivan’s parents shared with us that he has been talking up a storm with excitement about his van!
They also send a heartfelt thank you to the Chive Nation:
“Thank you so much! We can’t express how much of a difference the van makes! We can never put into words how thankful we are, thank you with all our hearts and souls!”
Read the original story HERE.
Over the last year Alex has been able to experience a strawberry festival (that’s a big deal in Florida), a trampoline play house, swinging in the back yard, multiple beach trips, really cool play grounds with wheelchair access, pool parties and a trip to the Florida Aquarium for her 13th Birthday!!
Alex’s family shared this message for our Chive Nation: “We don’t have enough words to thank you all properly for the way you have made Alex’s world way more than 10% happier!! We have had so many people ask us about our van and we jump at the chance to show them and tell them what Chive Charities did for our family and so many others!”
Read the original story HERE.
She has gone a year without any hospital visits and has been recuperating well. Tia loves dancing to the radio and staring out the window of her van during all her travels. Tia recently had an evening out dancing the night away while attending the Night to Shine Prom, Shine on Tia!
Read the original story HERE.
She is majoring in Biology at community college and is also working, she hopes to commit to college away next year. The dentist that treated Emma sent us a picture of her beautiful smile!
Read the original story HERE.
Cody shared these pictures of Otis doing what he does best, being his partner, companion, and confidant.
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The playscape Chive Charities granted fits the bill perfectly, but assembling it all would be a BIG task. Fortunately, the amazing folks at OK Chive jumped right in to lead the project and welcome Andrew and his family to Chive Nation. Judging by the pics, it was a big success! We're so thankful to have the kindest, hardest working supporters in the world, always ready when the underdogs need their help. Thank you, OK Chive, and enjoy your awesome, SAFE backyard, Andrew! KCCO!
Read the original story HERE.
Lexi’s mother shared with us that she has been doing great! She has been busy preparing for her twin sister's high school graduation. Lexi is excited for all of the upcoming gradutation celebrations. Lexi was also in the audience at her sister last high school musical performance proudly showing her support- Bravo Lexi!
Read the original story HERE.
Ken shared that people now recognize Fiona before him and that she has developed quite the following of fans amongst his friends, family, Veterans organizations, the senior center, and at the VA. Ken is able to participate in everyday life and whioch has helped increase his self-confidence. Ken says:
“She puts a smile on my face every day. I am a socially better equipped person since Fiona picked me as has companion. I can now cope with being out in public. Although, I still experience anxiety and an occasional panic attack, my furry friend is always at my side so I simply reach down and pet her which grounds me. Her loyalty knows no limits."
Read the original story HERE.
Jocelyn's Mom, Rebecca, shared with us that Jocelyn has started walking unassisted. The floors have helped her so much and she is able to walk around without getting caught up on carpet or the tile.
Jocelyn has had 3 additional surgeries since her last update and Mom, Rebecca says: “It’s been so nice being able to drive with her wheelchair. Thank you again for helping us get things to help with Jocelyn and her care.”
Read the original story HERE.
"Elizabeth and I have so much fun playing games together – the XBox is so fun, but I had to learn how to play it, it was pretty funny! There was this completely awesome moment recently...I had turned on the music while playing, and I felt amazing! I had forgotten how much I love listening to music. I'm working on getting a nice pair of headphones to really enjoy it.
The most noteworthy update is the birth of Jacob, our miracle baby. Doctors all said it couldn't happen anymore, but he is here!"
Enjoy these recent pics from Samual's world - YOU made it happen!
KCCO, Samual!
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Natalie's mom checked in recently and told us it's been a rough few months for her sweet girl. She's been hospitalized five times at UCSF since December and will soon have surgery to place a feeding tube. It will mean a big adjustment for the family, and Natalie's mom admits it'll be a few steps back, too.
"Before this craziness, she had gotten so much use from the stroller and stander! She was eating in her chair and hanging out in her stander for a couple hours at a time! Her head control has improved and the smiles she gives while in her stander are priceless! It's as if she knows she’s standing like us and she just loves it – it really makes my heart melt. My family is very blessed to be a part of the Chive Charities family."
Sending our love and well-wishes to Natalie as she fights for her mobility and independence - you can do it, sweet girl!
Read the original story HERE.
Shelby’s Mother, Victoria shared the impact the Chive Charities Grants had made for her family & Shelby:
“Our beautiful van has just been awesome to us! It has made life so much easier, we can drive our van into the garage and not have to take trips to our home like we used to. We have gone on so many adventures these last couple years, including Knott’s Berry Farm, Los Angeles, the beach, the Zoo and countless doctor’s appointments. We also visited Universal Studios, were Shelby was excited met some of her favorite characters! Shelby has been loving her bike and iPad too. Shelby is always laughing when she is on the iPad"
Read the original story HERE.
Anastasia is doing so good, she got ankle braces to help with her stability and so she doesn't fall and got to meet Piper, her new service dog and friend. They got along really great, Anastasia’s Mom shared with us. Anastasia was completely relaxed with Piper by her side. Piper will be trained to assist Anastasia when she is walking up and down stairs and to retrieve items when she drops them. Piper will also be trained to get between Anastasia and the ground to help prevent injury if she falls. Piper is busy growing out of her puppyhood and training to be Anastasia’s new best friend, she will join the her new family soon!
Read the original story HERE.
The team at Bit By Bit shared this message with us:
“We just absolutely LOVE our new space and utilize it every day. Both our staff and our clients are so appreciative for the generosity of the donors at Chive Charity. Thank you and KCCO”
Read the original story HERE.
Megan’s Mom shared with us that she is doing great! She is in her last year of high school and is maturing into a very lovely young woman. Megan has been busy taking day trips in her van and attending church with her Dad & Step-Mom. Megan’s mom also sent us a special note to share with the Chive Nation: “Thank you so much again, for this wonderful gift. It has been a huge blessing in many ways!”
Read the original story HERE.
"Heaven gained the most beautiful angel today. Abby Grace touched the hearts of anyone who ever had the chance to meet her and even those who weren’t as privileged. She taught me how to be a better person and to have a different perspective on life all together and I’m so blessed God entrusted me with one of his angels, even if it was only brief. We fought a long hard battle and in the end we were not defeated. Abby won in her own way as she now gets to live and be whole in heaven with Jesus...she’s finally at peace and right where she was meant to be.
I just want to say thank you to all of the people who followed us on our journey and thank you for all of your prayers and support. Please continue to pray for us.
I love you baby girl, you will forever live on in my heart."
Our hearts go out to Abby's family and to all those she touched with her amazing spirit.
Read the original story HERE.
Devon visited theChive recently and shared the great news that he had been voted the Firefighter of the year—way to go Devon!
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Bryce’s Mom shared that he is doing well in his mainstream 1st grade class and is working hard on his reading and handwriting which are his biggest challenges right now. All of Bryce’s hard work has not gone unnoticed at Mankato Pediatric Therapy Services who will be featuring him as Kid of the Month!
This past summer Chiverhood of the Traveling pants did a Nerf War and raised enough money for Bryce to replace his iPad that was lost after one too many temper tantrums, which he is almost all grown out of now. Amazingly the biggest change lately has been his sleep. Bryce follow his nighttime routine like a champ and goes to bed at 8:30 without being prompted. Sweet Dreams Darling Bryce!
Read the original story HERE.
Brayden's Mom shared with us that he is doing great and he has definitely been busy using his equipment and making progress gaining strength. Due to the winter weather, Brayden is using his indoor gym more than the bike at the moment, but sunny days are ahead for Brayden!
Read the original story HERE.
"This van has made such a positive impact, along with the iPad, GoTo seat and Tomato Chair. We are so thankful for all of it! Neji has come an incredibly long ways with her communication using the iPad as her communication device. She has so much to say and she is really happy to share it all; there is always more vocabulary to add and more she wants to say, and this lets her adapt!
Her Tomato Chair is already being used even though I got a bigger size so she could grow into it. It is actually really comfortable for her even though it is bigger, and she likes to use it to curl up and watch movies.
Her Goto seat has really made things easy; it's a must-have on our trips, when we go out to eat, or even when canoeing! I wish I had pictures of that! It is so nice for her to be able to sit on the floor with her friends and family and play games and toys. She really gets to feel included!
We have been up to so much lately. We are going through renovations on the house, including a huge wheelchair ramp. We are currently working on redoing the bathroom for Neji.
We had a great time spending the holiday with our family, and it was so nice to have a roomy van where she can fit the equipment she would want to have on a long trip. She especially enjoys getting to sit in the front, middle, or back! She rides up front with me and puts her wheelchair as tall as possible so she can see the road, too. She is even better at getting all positioned in the vehicle herself! She has mastered the ramp already! She also loves riding in the way back with Annabelle – it's like their own little room back there.
Another great thing about the van is that we don't have to worry about the weather anymore. We used to be out in the snow tying down her wheelchair and putting the big cover on and strapping that down. Now, we just roll her up and click her in and we are good to go! I just couldn't ask for anything better!
We are so, so grateful for Chive Charities and all the much needed equipment and transportation. It has made so many aspects of our lives easier, and fun!"
Read the original story HERE.
Can't wait to see all the places they will go. KCCO, Hiatham and family!
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Their first family adventure was to their city's Christmas lighting and holiday events. After a few initial hiccups, the boys' car seats are installed, so they're extra safe on the road.
They also went to a very long doctor appointment, but it was much easier on everyone that it used to be! Bonus: big brother Joseph is loving the lift and loves to hook his brothers' wheelchairs into the tethers. Mom says he’s a big help!
Safe travels, y'all!
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Doctors previously told his family the chance he would use both his arms was very grim, but in true Jayden style, he proved there are no limits in his eyes. Keep on breaking the rules, Jayden, the whole Chive Charities family is rooting for you!
Read the original story HERE.
"Evie is able to safely and comfortably travel and our backs aren't being placed under the strain of transitioning her between the chair and a carseat. We truly can't thank Chive Charities enough.
The last year has been a busy one as usual. In January, Evie went to Disney for the first time and during our trip we also went on a helicopter ride. She loved every minute! We did have a few bumps with seizures towards the end of the school year, which resulted in her second trip in an ambulance, but we were able to get her stabilized and she returned home. She started first grade, but her school year has been cut short due to another surgery. She has had 6 procedures in 5 years, and this most recent one has been the hardest in terms of recovery. On October 18th, we checked into Wolfsons Childrens Hospital, where she underwent a femoral osteotomy on both legs. Her leg was 60% out of the socket on one side and the other side, while not as bad, was corrected at the same time. Evie stayed in the hospital for about 10 days (so did I), and once home we were on a routine of pain meds and sleeping. After about 4 weeks, she was able to resume aquatic therapy (which she LOVES), and then a few weeks later she returned to school. Evie is truly a fighter and we ask so much of her and her little body. She never ceases to amaze me with her resilience.
She turned 7 on October 4th and we hosted her birthday party at the Mandarin Skate Station. She had a blast! This girl really enjoys being on the rink. During one of our trips to Atlanta to her Rett specialist (Dr. Tarquinio), we went to the aquarium and it was such a joy to see how much she enjoyed looking at the fish and other sea creatures. Her smiles and joy are always worth the effort. In February 2018, Evie will be participating in the Disney Princess Half Marathon weekend by "rolling" in the 5k with me and another runner. She hasn't warmed up to 5k as much as I would like, but I am confident she will grow into it as we become more involved in Jacksonville.
We joined another organization called Ainsley's Angels as an Angel Runner and Angel Rider. Evie will also be featured as one of the miles in the Wolfsons Challenge in January 2018. It is a Ultra Relay race and we will be participating with Team Ainsleys Angels (Jax).
Evie became a Girl Scout with one of her best friends and has really enjoyed the experiences. She sold cookies last year, went for a hike this year, and we hope to go on our first camping trip sometime in the next year. It has been such a growing experience for her and the girls in her troop. We always try. What we try may not always work, but we try and so far this is working.
We've bumped into a few local Chivers and I'm always happy to tell them about what their participation has meant for our family. We are also working on our 3rd Power the Flower 5k here in Jacksonville with Ultimate Racing Inc. It raises awareness of Rett Syndrome and the proceeds go towards bringing a communication and literacy workshop for people with complex communication needs to Northeast Florida. It is never a dull moment in our home.
We hope to attend Green Gala next year...thank you again!"
Read the original story HERE.
Buckshot and Kate - the talk of the town
As I am sure you can imagine, Buckshot and I create quite a stir whenever we are out and about. It does not matter where we are or what we are doing there is always someone talking behind my back. I mentioned to my husband that sometimes it can be worse the being in high school. Most of the time I hear, “Ooooo....mommy look at the doggy why can’t I bring my doggy with me?” or “She has a service dog because she is blind” - this one always make me giggle because most of the time I am reading something. However, there are occasions that I hear the snide comments, “What does she need a service dog for?” or “that’s just her pet with a fake service dog vest.” It is these comments that are the most hurtful. They remind me that I look normal and healthy, but on the inside I may be falling apart.
Buckshot and Kate - take a cross-country road trip
This past summer my husband was activated and informed he would be leaving home for about a year. Knowing that he would be gone for such a long period of time, we decided that we would make the trip together to get him settled, a little mini vacation with some much needed rest and alone time. It was a long drive and for the most part enjoyable. The scenery was beautiful and the views were sometimes stunning. Buckshot and I enjoyed some amazing walks together along the way.
Buckshot and Kate - take flight
Once getting my husband settled at his final destination, Buckshot and I had to fly back to Kentucky. This would be our first flight together as a team, Buckshot’s first flight ever, and my first flight since returning home from overseas. To say I was anxious and panicked, would be an understatement, however Buckshot was cool and relaxed as always. He never ceases to amaze me, when I am at my worst Buckshot is always at his best. His ability to read my feelings and emotions and walk me through my darkest moments is something I will never completely understand, but I will always be extremely grateful he is ever present.
Buckshot and Kate - take a hike
For Thanksgiving, Buckshot and I traveled back out to visit my husband. While there, we drove to Carlsbad Caverns for the day. The thought of being in such a dark enclosed, bunker-like underground cavern, was extremely frightening to me. As we drove closer to Carlsbad, the panic started to set in, my heart started to pound in my chest and my breathing became shallow. I began to wonder if I would even be able to enjoy the caverns and had started to think about asking if we could turn around and go another day. I turned to glance in the backseat only to be met by Buckshot’s soulful eyes and as if reading my thoughts and feelings he leaned over and licked the top of my hand and those same reassuring, calming eyes said, “We got this!”....and we did. Did the panic and anxiety rear it’s ugly head - yes it did; did it rule my moment and cause a meltdown - no it did not. Buckshot and I enjoyed our hike in the caverns and the small outdoor hike afterward - the views were absolutely breathtaking!
Buckshot and Kate - a reminder that PTSD, while ever present, does not define me
PTSD is a lifelong disorder. It comes in many different forms, I may look normal, but you cannot feel or see what my mind’s eye feels or sees. The past 10 months have not been without their dark days filled with depression, panic attacks or anxiety. If there is one thing I could impress upon you as you read through my journey, it is this: PTSD is a lifelong, ongoing battle for your mind and soul. It ebbs and flows, never knowing when or how hard it will strike, but PTSD does not have to define me. With Buckshot by my side, I never have to face those demons alone, he faces them with me, he never leaves my side, he is always there waiting patiently to guide me through the dark storms that life brings. He is a lifelong gift that makes life a little easier, makes life a little more enjoyable, but most importantly makes life worth living.
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So far, they've made it to doctor appointments, festivals, a football game at South Plaquemines High School, and their favorite city, New Orleans. We're super excited Douglas and Keena were also able to travel to see their daughter Dallas at the University of Louisiana at Lafayette.
Keena said, "It's been awesome! He has been so happy to be out and about! I can’t believe it’s been six months!! Time sure does fly. Douglas was so excited to see Dallas...I was too! Chive Charities made it possible. You've made our lives more than 110% easier!"
It's absolutely our pleasure. Keep on truckin'!
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Hannah had two major surgeries, a spinal fusion and arm rodding surgery, and still managed to earn a 3.9 GPA and land herself on the Principal’s honor roll list- You go girl!
Hannah will be graduating from high school at the top 1% of her graduating class! She hopes to become a successful graphic designer one day and has already been accepted to her top college choice. Your Chive Charites family is so proud of you!
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Highlights
Here's hoping 2018 is all good news, Aubree!
Read the original story HERE.
"This van has forever impacted our lives in a way that is beyond measure. Pre 'Belle Bus,' getting out of the house was quite a task. A simple trip out meant wrangling our ever-growing 3-year-old (at the time), disassembling her wheelchair, unloading and reloading her 'mini hospital' she travels with, and somehow not throwing out our backs in between all of the heavy lifting.
When we received the 'Belle Bus,' it had 39,399 miles on it. As of today, a whole year later, it has 58,195 miles. That is a little under 20,000 miles we have put on the van; 20,000 miles my sweet girl has had the opportunity to ride comfortably in her van; 20,000 miles of memories made; 20,000 miles of seeing all this world has to offer.
A few of those miles were to South Carolina, Washington D.C., and practically all over the state of Florida. Memories were made and I had countless opportunities to shout from the rooftops what an impact Chive Charities has made for our family. We are humbled by their graciousness, thousands of giving hearts, and monetary gifts that made this donation possible all for our Belle.
From the bottom of my heart we are forever indebted to Chive Charities. They saw the need and provided Belle with the opportunity to travel comfortably to and from for all of her outings. This van is so much more than a materialistic item. It is accessibility. It is opportunity. It is equality.
So, Chive Charities thank you from a humbled and forever grateful family."
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As his communication increases, his connection to his family is stronger than ever before. He's been able to enjoy more things that 12-year-olds like simply because he can communicate his wishes, like playing baseball, going to concerts, riding a four-wheeler, Snapchat, riding a jet ski, and playing basketball, just to name a few.
Ian made huge gains academically in 2017 as well. He started middle school in August, a huge milestone for him that his parents worried about quite a lot. New teachers, new building, new schedule...things that can be very difficult for Ian. But he came home from his first day of school with a huge smile on his face, saying on his iPad that he really likes his teachers, that it was kind of a long day but he really enjoyed it. With his iPad, Ian was able to show his family he knows how to spell, giving them hope he will one day type to communicate. He has also shown that he knows multiplication, another thing that helps shape what he learns at school. His family is so thankful Ian's iPad and communication program helped us "untrap" him from the world of silence many nonverbal kids face.
A few days into middle school, Ian used his iPad to tell his mom to stop kissing him when she drops him off in the morning because...embarrassing! Mom said she was not prepared for that, but loved that he had such a typical response for a 12-year-old boy!
With more communication skills, Ian can advocate for himself more and more. He let his parents know he wanted to be in the general education classes with his peers in 6th grade. His parents pushed for his inclusion and it has been a huge success – he loves the challenge and being with his friends. Recently, he scored an 83 on his interacting body systems science test!
Of course, all that good doesn't come without some bad, and we were sad to learn Ian was hospitalized several times last year and had a seizure in May, breaking his nearly seven-year streak being seizure-free. Fortunately, Ian was able to use his iPad to tell his family how scary it was for him and how his head hurt, which he had never been able to do with seizures in the past. What a relief it must have been for him to be able to communicate that with his parents!
Ian enjoys spending time with his brothers, who have learned to use his iPad to communicate with him too, going for family bike rides, and loving life in general. Sounds awesome, Ian, we can't wait to see what 2018 brings for you!
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His interest in toys has really spiked and he loves being read stories and looking at the pictures. In May, he was made an honorary captain for the Scotch Plains Fanwood NJ High School lacrosse team, which was very special. Liam turns six in April and is starting to make lots of new sounds – his family is super excited to see what this year brings for him.
Keep up the good work, Liam!
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Taytem has been doing great! She started preschool and absolutely loves it! She has a best friend named Sophia who also had a bone marrow transplant, though hers was a result of having cancer. They love each other so much and are the best of friends. She welcomed four baby cousins this year and is so excited to have another on the way!
Fortunately, Taytem has been pretty healthy this year. She's had a cold here and there, and took a big fall on her swing set at home, fracturing her humorous bone. She was in a sling for about a month, but she's one tough cookie! The family will travel to Minnestoa in February for her three-year post-transplant check-ups, and to see about the possibility of surgery to correct her hip dysplasia and knock knee.
Overall, it's been a great year for this "sweet, sassy, beautiful girl," her mom said, adding "She is so much fun to be around and is such a character. Thank you so much for keeping up with her and her story. Means so much to us."
Sending positive thoughts and well wishes to Taytem for a happy, healthy 2018!
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"Mason is on chemo drug to control his GVHD. Sometime is makes him feel yucky, but typically he feels pretty good. He attends school full-time and loves it! All the kids in his class love him, and I don't blame them! He still goes every 3 weeks to get an IVIG infusion to boost his immune system, and has to return to Cincinnati every 6 weeks for a check-up. All in all he is doing well. He still has plenty of struggles, though.
Lizzy is still well. She does continue to have some infections that a tricky to get rid of – even though she has a functioning immune system, sometimes it's not as strong as normal person. She is still as spunky as ever and loves to sing!
As for us, Jeff is still working a ton, I am loving working again, and I start school in January for my business degree. My goal is to start an non-profit and continue advocating for rare diseases. We have also been working on adapting our house so it is more accessible to the kids and their dwarfism. Since they will always be small, we want to make life just a little easier for them.
Our local Chive Chapter has chosen us for their RAK-mas and we are pretty excited!"
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His mom shared that their Chive Charities van made it possible for the family to travel to Tallahassee, Florida so she could advocate for newborn screening at the state capitol. Thanks to that testimony, Florida signed into law a bill to improve and expand their newborn screen, including screening for ALD beginning in July 2018!
In other great news, Tyree had a special 8th birthday party, where there was a ceremony of love for his baby sister and him, and also took a trip to Tampa to see friends this summer. He attended a local safe trick or treat event for Halloween and even dressed up, and they made time to meet fellow Chive Charities recipient Alyssa and her family.
We're so glad the van is helping Tyree enjoy as much as he can, and we wish him many more travel days to come!
Read the original story HERE.
Read the original story HERE.
Through the program, eight veterans embarked on a journey to learn conceptual-based art techniques to heal their unseen wounds of war and learn skills to cope with combat-related trauma. The Intro to Art for Veterans course was led and taught by other veterans and introduced students to a wide variety of mediums including writing, woodworking, and photography.
Click HERE to see and hear this incredible program in action.
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"We got a point where she was having multiple seizures with apneas (meaning she was not breathing while seizing) a day. I have rescue medications I can give as a way of resetting her brain, but they put her to sleep. I was using her rescue medications multiple times a week. We had tried to adjust medications and even changed some, but had no success in relieving her symptoms. She was already on the strongest there is, so our options are very limited. She was recently diagnosed with a bleeding disorder, which only complicates the medications she can take. After speaking with her neurologist, we decided to look in to a VNS. The vagus nerve is located between the coratid artery and jugular vein. Obviously, I had a lot of concern with placing the lead, given the bleeding disorder. We met with a hematologist, who made sure she had everything necessary for a safe procedure. We prayed a lot and really felt that God was leading in the direction of the surgery. I'm happy to report that she underwent surgery on Halloween (10/31/17) and everything went perfect! She is doing extremely well and is basically acting like herself! She had no complications from the bleeding. Also, after speaking with the surgeon, we feel pretty confident that she's already seeing some improvement from the VNS, which they said would take months to see. She has a new kind of device that detects abnormal heart rhythms and will send extra stimulation to help prevent a seizure from happening. She'll have to go back to the hospital every couple weeks to have the machine turned up a little at a time to allow her body to adjust to the stimulation until we reach a therapeutic range. All of that being said, she's taking it like a true champ! She growing up quickly and is full of spunk and life! We are still using her chair and swing. Her PlayPak is a bit small for her but we use some of the pieces to position her so it's still being used!"
Keep up the great work, Alexa!
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Doctors decided transporting him to Johns Hopkins would be too risky at this point, so they operated on him at their local hospital. They re-opened his incision and drained more puss than expected, choosing to leave the incision open in case they needed to clear it again. They hope the infection hasn't reached the metal plates they just implanted, which would greatly complicate his recovery. Brodie had just healed enough to begin walking, so the infection and surgery are big setbacks for the little guy. Please keep him in your thoughts and prayers as he starts his recovery all over again.
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The last phase of Lexi's home renovation project is complete and she's enjoying her safe, secure home.
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"They are both sophomores in high school and loving it! And, if you can believe it, they will be driving in just a few short months! So, steer clear of the kid driving with a dog hanging out the passenger window! They will be my Thelma and Louise!
Makayla has gone nearly a year since her last brain surgery, which is mind-blowing for us (no pun intended)! She was averaging 5 or more surgeries per year, but is now paving the way for a life that honestly seemed so unattainable a mere 5 years ago. I have no doubt that all this is courtesy of our faith, Makayla’s determination to beat the odds, and Bailey’s unwavering loyalty, love, and support. Makayla’s life has drastically changed for the better since Bailey entered her life as her medical service dog. There are some gifts in life that 'Thank You' is completely inadequate for.....Bailey and the life she has given Makayla is one of them. Thank you, Chive Charites. Humbly, thank you."
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First up: the playscape purchased with her Chive Charities grant – When it was delivered, 12 HUGE boxes on two separate pallets, I thought to myself, this will never be completed!! My husband and dad worked on this for two weekends, non-stop, and came through for her. She loves playing on it and can now swing in the big swing on her own.
April: Blakely played t-ball for the first time ever and let me tell you, SHE WAS A ROCK STAR! Our recreational park hosts this special league twice a year and our community really gets involved. There are different ages on the teams, however, each player has a helper with them at all times. Blakely’s’ siblings even got involved; which was amazing!
May: Blakely started wearing glasses! She found the exact glasses that she wanted and they're PURPLE!! She loves wearing them, maybe because she can now see, and she looks adorable in them.
June: Family vacation to Universal Studios in Orlando, and once again Blakely is the center of attention. And did I mention, she is a dare devil too? She's not afraid of anything and wanted to ride even the big roller coasters!! (Which. she couldn’t of course.) We took her adaptive stroller with us and we couldn’t keep her in it – she wanted us to carry her so that she could see everything! After two days of that, we made her sit in it.
July: Blakely rode on her first airplane EVER!! Blakely, Mom, and Granny flew to Arizona to attend the Joubert Syndrome Conference, which was our first conference. We had the opportunity to meet other families from all over the world that have been affected as well. We were able to attend numerous classes that taught us more than we could’ve ever imagined.
All fun things (summer) must come to an end and it did! August came and it was SCHOOL TIME again! Thankfully, Blakely loves her class and teachers so she doesn’t mind going. Unfortunately, she fractured the top of her foot and had to get a cast on the day BEFORE school started. She wanted a pink cast, so that’s what she got. She had to keep all of her weight off it for 3 weeks, so once again, her stroller came to the rescue!
Blakely turned 5 on September 24th and had a Peppa Pig party and cake. She was able to even blow out her candles this year, major improvement from years before.
October: Blakely had her second eye surgery and is recovering very well. Her eye started turning inward again and her doctor wanted to correct sooner than later. We traveled to Dothan, Alabama where the surgery took place, and she was released the same day. Did I mention she is the strongest little girl I know? We just went to our town festival and all the kids were able to ride rides and have a blast. Now we are getting ready for Halloween and Blakely is dressing up as her favorite thing ever, Peppa Pig!! She is going to be the cutest pig in this entire world!!
Thank you again to all of the donors that make the impossible become possible! We are truly blessed.
-Kelly Sweatt, mom
Read the original story HERE.
Her family lives between the Tampa/St. Petersburg area and Orlando, and they're constantly traveling back and forth to various doctor appointments. Lacey was hospitalized with pneumonia in July at Tampa General Hospital and was pretty sick last month. Having the dedicated therapy room was so helpful because Lacey has to have someone sleeping in the room with her to help and to have space for all her medical equipment. Lacey and her family are so thankful for all Chive Charities did to help them!
Read the original story HERE.
When we first met Maximuus, his mom told us it had been her promise to Max that they would celebrate his third birthday at Disney World, and we're so excited to see their dream come true. They loaded up their new van and headed to the Magic Kingdom for a truly special celebration. We're so happy for them!
THIS is the power of the Green Ribbon Fund, and how your support changes lives forever. Thank you.
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Luke's mom wanted to give you an update on what he's been up to this year, and the list is pretty awesome. Aside from two hospital stays due to pneumonia, his health has been pretty good. His mom says he's really packed on the weight since his feeding tube was placed last June, doubling his weight in a year's time and making him look so healthy and grown up. We're soooo glad to hear that!
The school year was packed with fun, including prom (Mom was his fashionable date!) and Special Olympics (he won first place in his race and second in his tennis ball throw). His buddy Caden did an awesome job helping at Luke's Special Olympics race, giving him a pep talk beforehand and cheering him on the whole way.
Summer was busy and pretty much non-stop. Luke and his family went swimming, to family camp with their church, and on a fishing trip to Port Aransas in May. Luke even caught a small shark!
Luke and his brother Adam still enjoy horseback riding almost every week. It's so awesome to see him on a horse and sitting up so straight, which helps him get strong and confident, too.
And last but not least, Luke turned the big 2-0 in August! He is an amazing young man who lives his life to the fullest, and his parents vow to never hold him back from trying anything and continue to take him on many, many adventures.
"Thanks to Chive Charities, these adventures are so much easier with our wheelchair accessible van!"
Read the original story HERE.
Today, he's 17, a senior in high school, on track to graduate this June. WHAT???
Once reserved and lacking self-confidence, Christopher has continued to shine since his Chive Charities grant for dental bridges gave him back his smile. He's on the varsity cross country track team, a member of the Fitness Club, and involved in Campus Ministry, where he volunteers at a nursing home, soup kitchen, and helps the elderly rake leaves. He was inducted into the National Honor Society this year and no longer requires speech therapy. Yay! His mom says people can understand him a lot better thanks to his beautiful teeth! Christopher is applying to colleges and considering a major in Criminal Justice after graduation.
"We really appreciate all that Chive Charities has done for us and we can't thank you guys enough! It has changed Christopher's life!!!!"
Read the original story HERE.
Ashlyn is doing awesome! Laura said they are cautiously optimistic in sharing Ashyln made it through the year with no hospital stays! She's enjoying 8th grade and turns 15 on October 23rd. She spent the summer doing fun stuff, like the open house at her dad's company, checking out replicas of the Nina and Pinta on the Mississippi River, and at her hometown fair, Benton Neighborday. Keep that good news comin', Ashlyn!
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Robocamp supports kids who have had hemispherectomy surgery (removal or disconnection of one hemisphere of the brain to stop medication-resistant seizures) through a variety of comprehensive therapy services. Each camper receives intensive physical and occupational therapy, an orthotics review, and functional electric simulation. Fun is always in the mix, too, with recreational therapies included as well. The goal is to address challenges these children face from a physical, emotional, and social standpoint, in a camp-like environment where the campers can be surrounded by peers "just like them."
Participants generally see improvements in their gait speed and endurance, and increased awareness of their paretic hand, but also develop lifelong friendships and a deeper sense of satisfaction and engagement in Robocamp overall. For many of the campers, it is the first time their differences are actually what makes them similar to their peers. It is a powerful thing to be surrounded by people who "get it" and who have traveled the same journey as you have.
Throughout the two-week Robocamp, recreational therapy became a time for the participants to engage among themselves, build lasting relationships, and get out of their comfort zone in a safe environment. They engaged in activities that allowed them to develop bonds in a unique social setting while providing them with creative outlets through art, games, and communication. Campers played Uno and the board game Life Stories, and created Marble Art with Ken. From the first moment the Robocamp participants played Life Stories, they were hooked! And on two different occasions, a well-known artist volunteered to organize sessions of marbling art. It was definitely a great summer!
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My phone rang on the way to the airport. It was Chive Charities’ Angie Cone and she had her sassy pants on. “John, you’re going to Lincoln, Nebraska.”
“It’s funny you say that, Angie, and I’ve heard nothing but good things about the Pinnacle Bank Arena, but Billy Joel is actually playing at Madison Square Garden.”
“That’s cute John, but we have a girl trapped in her house. She’s also allergic to her house, so Javi’s going to meet you at the airport and make sure you go west like a good boy. Piano Man can wait.”
“I was actually going because I wanted to hear Billy play 'New York State of Mind' IN NEW YORK, Angie.” I’ll score points wherever I can with that girl, even a flimsy point.
She said the current environment at Kenze’s home had placed her in our “red sector,” as a humid summer descended on Lincoln. Outside her home wasn’t any better. Here’s Kenze having a seizure at the local WalMart with her service dog Makki performing a series of compressions to bring her out of it.
O.K., Piano Man can wait.
Kenze has a series of syndromes that domino one after the other. It started with Ehlers Danlos Syndrome (EDS), which causes her joints to dislocate easily. EDS dominoed into postural orthostatic tachycardia syndrome (POTS), short-circuiting Kenze’s circulation and causing increased heart rate, blood pooling, fainting, and seizures.
All this toppled the last domino, Mast Cell Activation Disorder, meaning her cells go to battle against each other in one big allergic reaction cage match.
The doctor’s recommendation was literally, “Keep Kenze indoors and in a wheelchair to prevent fatigue and injury.” As Kenze told me, “I’m like a bubble boy… only a girl. I’m bubble girl.”
The biggest culprits, all the allergens that cause Kenze to react, are present in her home, especially her bedroom. Mold and musty carpet were causing Kenze to have multiple episodes a day, from seizures to “symptoms that resemble a coma.” I still don’t know what that means, and Kenze’s eyes filled with tears when I asked. I’ll leave it at that.
The house needed to be gutted, completely renovated, now, before the heat of summer closed in on Kenze completely, both outdoors and in. I asked what color wood she liked, she chose Aspen CW-462. A fine choice. When I departed, I asked Kenze if she could make this year’s Green Gala? There was that pause, you know that pause that happens when you’ve asked the dumbest of questions. My overdeveloped sense of optimism gets me in trouble sometimes. “About a million things would have to go right with my health but I’ll try, O.K.?”
Angie was right, I needed to be on that plane. On my way back to Austin, I got a text from a friend. Turns out, Billy Joel rescheduled his concert due to a viral infection, Piano Man didn’t sing us a song. And McSorley’s Tavern was temporarily shut down to due health violations. I would have been on a plane to nowhere in NYC. Fate, it seemed, had played its own hand.
Renovations would cost $15,000. Kenze told me I couldn’t ask for any more than that. “There are people out there who need it more than me.” I remember thinking, “We’ll see what theCHIVE community has to say about that.” A few days later, Chive Nation politely declined Kenze’s offer to raise $15,000, and raised $70,000 instead. Enough to completely overhaul Kenze’s entire home and pay for her to go to college to become a nurse.
Within 48 hours, volunteers were on-site figuring out what needed to be done, ordering new flooring, molding, paint, everything. The volunteers, as you can imagine, were Cornhusker Chivers Brian Volz and Brent Smoyer.
When the construction crew departed, they left the Pardes’ house keys under the door as requested, with a new lanyard of course.
The house’s molding was infested with mold.
Now a fresh start…everywhere.
The new kitchen.
Before: Kenze wouldn’t dare go in the basement. Since the house flooded a few years back, it was simply a no-fly zone.
This is the basement today. Now Kenze can hang out and watch the Cornhuskers play on Saturday with her family.
The living room, so fresh, so clean.
And finally, here’s her new bedroom. The rotten carpet and walls are long gone, replaced with new floorboards and crown molding.
Perhaps the best news of all…when I spoke to Kenze, she hadn’t had a single allergic reaction in three weeks. In that same timespan before the renovations, she had two dozen episodes. The plan worked, everything worked. It worked so well in fact…
Two Fridays ago, our secretary came in my office. “There’s somebody here who wants to see you.” I get that a lot, don’t usually care too much. “Get them a beer and tell them I’ll be out in 5-10 minutes.”
“It’s Kenze.”
“Kenze? Like Kenze Kenze?!”
Just three months prior, venturing outside her home was a nearly impossible task. Kenze had flown with her family to Austin for our annual Green Gala. She hadn’t flown on a plane since before she was diagnosed. She’d actually done it!
This is Kenze (and Chive Charities staffer Whitney) in front of her photo on our wall of all the recipients we’ve helped. More than 200 faces. More than 200 lives changed, many saved.
Kenze ready for the ball.
Lots of Chive Charities recipients made it to the Gala. Here’s Emberlyn losing her shit. It was late.
We’re nursing tender wounds across America right now after a merciless barrage of hurricanes and indiscriminate bullets in Las Vegas. I truly hope y’all have enjoyed Kenze’s follow-up. Her story is a heart-warming example of how much beauty and compassion Chive Nation possesses.
As uncertain as things may seem in our country, I know one thing for sure – as long as there are brave people standing up for those who need our help the most, the evil forces that assail us will never win. And it’ll be Chive Nation up front, leading the way.
KCCO,
John
* A special thanks to our Cornhusker Chivers, Angie for always being right despite my childish protests, and to our Green Members. Without this small group of unsung heroes, Kenze’s story would never have happened. It was our Green Members who first purchased Kenze’s orthopedic bed and realized there was much more we could do. Their reward was meeting Kenze at this year’s Green Gala, and that is reward enough for them. Become a Green Member RIGHT HERE!
*Also, a big thank you to McKenzie Hildreth Ring from JM Studios Omaha for providing the incredible update pictures of Kenze, Makki and her home.
Read the original story HERE.
The last time we heard from his family, he was still on four different seizure meds, but since being on a ketogenic diet, his family has been able to wean him off three of those meds, which has made a world of difference in his life! Friends and family have commented on how bright his eyes have gotten, and everyone notices how much more alert he is and how big his personality is now! His parents told us he's an absolute joy to be around.
It was a buys, super fun summer for Kellan. He and his family spent a lot of time at the lake this summer, and Kellan was able to ride a Seadoo for the first time – he loved it! He turned four years old in July and started pre-K in August, which he also really loves. Recently, Kellan's big sister Madison welcomed a baby girl into her family, so now Kellan is an uncle! His mom says he's still the most snuggly boy in the world, who loves hugs, any kind of musical instrument (especially a tambourine), and has gotten very tall over the past year.
Kellan's Chive Charities grant purchased home therapy equipment, and it has continued to play a huge role in his development. He knows where all his toys are and crawls around to everything he wants. The room starts out clean at the beginning of the day, and by the end of the day it's a happy mess from him pulling everything out of his toy baskets. When the family goes on vacation or have been out of the house all day, he's anxious to go back to his room, which has become his safe haven.
"We are eternally grateful for this gift Chive Charities has given our son." ~Misti Wood
Read the original story HERE.
The family's generator ran long enough to perform his medical treatments, but they took refuge in the van to keep him cool in the air conditioning. Kole's mom explained he had been sick with pneumonia the Thursday prior to Irma's landfall, but because they have the wheelchair-accessible van, they could take him back and forth to the doctor and avoid being admitted to the hospital.
The first photo above is of Kole while the power was out, hot and sweaty and ready for some AC! The second is after power was restored and "he grew a mustache because he became so manly and tough!" Thanks for the laugh, Cat! She also shared how immensely grateful they were and are for the gift Chive Charities gave them: "I can never say thank you to everyone sufficiently."
Truly, her words are all the thanks we need. KCCO, Kole and fam!
Read the original story HERE.
Read the original story HERE.
At the Friday night football game September 22, Trey was crowned Homecoming King!
Check out this amazing video for more: http://www.kxii.com/content/news/Community-rallies-behind-17-year-old-names-him-homecoming-king-447221653.html
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Jamie's parents let us know his leg pains have decreased since getting the therapy spa, and they've been able to catch up on medical bills now that his strips and blood monitoring machine are covered. They mentioned they have a trip to Florida on the books because they finally feel comfortable enough traveling with him thanks to their portable AED.
"We still have a long way to go, but it definitely has made life easier for us just in the last 6 months."
That's great news! Keep up the good work, Jamie and fam!
Read the original story HERE.
"We really feel that saying thank you for the grant for the wheelchair accessible van that was given to Lauren is so inadequate.
It is not just about saying thank you for the actual van. It’s about recognizing the small army of people who dedicate their time and effort to helping others. In the domino effect of these people, Lauren received this grant.
But to just say thank you….still not enough.
It’s only enough if thank you includes each medical mile
It’s only enough if thank you includes each family mile
It’s only enough if thank you includes each pharmacy mile
It’s only enough if thank you includes each therapy mile
It’s only enough if thank you includes each rehabilitation mile
It’s only enough if thank you includes each social mile
It’s only enough if thank you includes each emergency mile (we don’t like these as much)
It’s only enough if thank you includes each happy mile…
I needed to be pushed, quite literally, to apply for this grant. It has been a very remarkable experience. Still unbelievable, yet remarkable. The impact to us and for us is enormous. Having this transportation for Lauren has transformed what we are able to do with Lauren on a daily basis.
Although the summer was a slow start here for Lauren medically as well as a slow start with mother nature it all worked out soon enough. Once Lauren picked up, she’s been able to enjoy some great activities. She’s had a trip to the movies, been out shopping for new sunglasses, been to her grandparents’ house for Sunday swim and barbeques and recently went to the apple orchard. She accompanies us much more frequently for the usual errands, which until recently, weren’t so usual. They were almost impossible.
She is very happy to be out and about and enjoys not only the riding in the van, but the great places it takes her. And that is just the best!
We thank you endlessly and always.
Kevin, Rachel, Katie & Lauren McCullough"
Read the original story HERE.
His mom said Brodie's hips and legs was a lot worse than doctors expected, or had even seen before, so a total of 6 plates were implanted instead of 4. He required an epidural for the surgery, which wasn't removed unti Friday evening. The first two nights post-surgery were incredibly tough for sweet Brodie. Wednesday night, his pain level was so high not even morphine could keep him comfortable, so he was admitted to the PICU. Mom says even changing his diaper was excruciating. Then, his O2 level dropped below 60, requiring supplemental oxygen.
Brodie and his mom moved into a bigger room Sunday and he was much more comfortable and excited to have his trucks and cars to sit in the bed and play. He is getting more like himself every day. Brodie and his mom will stay in Baltimore for at least 4 more weeks for recovery and physical therapy. It's hard being away from the rest of the family, but hopefully this will get Brodie on the right path ASAP.
Hang in there, Brodie!
Read the original story HERE.
Read the original story HERE.
At the end of August, Emberlyn was fitted for prosthetics and the pics are simply amazing. She spent several days at Shriner's Hospital getting used to her new legs and learning how to walk in them. Check back for more udpates soon, since there's no doubt Emmy will be on the move!
Read the original story HERE.
This August, students in the Creativets proram really came together as a team to create some thought-provoking art. Enjoy!
Read the original story HERE.
It was a huge setback for the super active vet, but once he was cleared for training, he went full throttle. Recovery has included lots of time on his handbike and recouping in the therapy spa Chive Charities provided. He was back to mountain biking in Colorado by August, and already thinking about what adventure he'll take on next.
KCCO, Ricky!
Read the original story HERE.
Read the original story HERE.
They're creating tie-dye shoes and donating the proceeds to charity. We love Kyndle's great big heart, and smart business idea. Best of luck to these awesome girls!
Read the original story HERE.
After talking with Samual, he mentioned how much he enjoyed playing games with his daughter Elizabeth, but the system she uses wasn't working. We couldn't bear the thought of them missing out on special time together, so we sent them an XBox to keep the good times rollin'. Enjoy your family bonding, Samual and Elizabeth!
Read the original story HERE.
She competed in the All Ability Tri4Youth event, where she was paired with two other teammates to help her through a 1/2 mile run and 2 mile bike ride. She did the swim portion all by herself, with only verbal cues from her swim teacher. She was so proud of herself and couldnt stop looking at her medal!
Izzy spent a wonderful week with her family at Camp Attitude in Oregon, where she rode horses, spent a day on the lake, sang for the talent show, and had all sorts of fun.
Sounds like the perfect summer, Izzy. We are so proud of you!
Read the original story HERE.
Life is busy but great as summer comes to a close. Denver spent some time at summer camp this year, and had a wonderful counselor to make it a great experience. The family squeezed in a quick beach vacation, Denver's happy place, and are just starting to be free of all the sand that made it home in his swim trunks! One of the coolest things they shared about their summer was how they're so much happier after meeting Chive Charities:
"We still consider ourselves to be fortunate to have been chosen, and to this day, almost 3 years later, we see a visible change in our outlook. Our jobs are better, lives are better, and this is all because we finally realized someone cared about us and our struggles. We came out of our depressive shell and introduced our family to the world in all it's glory and have never looked back. Denver uses his room daily and we continue to keep it pure and for sensory activities only. I continually tell people the changing point In our lives was when Chivers showed their unconditional love to us. We are forever indebted to our Chive family!"
That's amazing, but the pleasure is ours. Have a great year in middle school, Denver!
Read the original story HERE.
They checked in to give us an update on life with their new wheelchair-accessible van, and we just LOVE what Mom had to say!
"Without the van we wouldn't be able to go visit my husband in a different state. We have the freedom to go and do everything! We went to the living museum of Virginia, which is three hours away - it wouldn't have been possible before."
Did Chive Charities make their lives 10% happier? "It's way more than 10%...more like 150%!"
Gee, that's really, really nice. We're happy to be part of your new adventures!
Read the original story HERE.
As soon as the new wood floors were laid in her home, Kenze felt so much better. Her parents said she hasn't had an allergic episode since then, and she usually has them daily. We're so excited for them, and thankful to our donors who absolutely saved Kenze's life. Stay tuned for a full update from John over on theCHIVE.
Read the original story HERE.
She let us know Jaiden's stiff skin has continued to spread and doctors think it is starting to enclose around his lungs. He had a feeding tube placed because he wasn't eating enough to survive, and suffice to say, this has been their toughest year yet. Natalie feels Jaiden's only hope now could be treatments only available in Europe. They're working on a plan now, but in the mean time, Jaiden's spirits are very low and he could use a little boost. We'd love to flood his mailbox with well-wishes and happy notes! If you have a moment and a spare stamp, you can send cards and letters to:
Jaiden Gulliksen
15251 County Rd. 5S
Alamosa, CO 81101
Get well soon, Jaiden!
Read the original story HERE.
"On July 31st at 3:02 a.m., my beautiful, sweet, sassy daughter Abigail Grace Shrader’s heart beat for the last time. I want you to know how much we appreciate all that was done for us by Chive Charities and what a huge impact you had on our life; not only because of your generous gift but because of the way our circle of friends grew by such leaps and bounds. I have no words to describe how broken I am by this loss as Abi is my whole world and everything I ever did was for her. Thank you again for even existing.”
Rest in peace, Abi.
Read the original story HERE.
This summer, Alani went on a Make-A-Wish trip to Disney, where Alani was able to get into the water for the very first time thanks to her wetsuit! Her mom gave us the rundown on how her Chive Charities grant items are helping:
The padded flooring has enabled her play with her sisters on the floor instead of having to sit in a chair, and her cushion goes everywhere with them to keep her comfy on their endless monthly travel. The learning station has taught her not only her alphabet, but also numbers and counting. She is able to identify so many more objects than she ever was before! Her language and understanding has improved so much, her family can hold normal conversations with her with no barriers. Because she's a homebound student, she has gotten tons of use from her computer already. Our Medtronic IPort has made administering her injections so pain-free, she hardly notices them anymore.
Health-wise, Alani has had a few medical issues related to a respiratory illness, but her numbers are great thanks to her extremely strict diet and daily injections, so overall, things are great. Her mom wanted to say:
"We cannot express in words how grateful we are to you and all of the donors who played a part in changing our lives for the better. We can never repay you, just know that we are forever thankful."
Keep up the good work, Alani and family!
Read the original story HERE.
She's had her driver license for about a year and still loves her Honda Element she named Dane! Here's what she had to say about it: "It's just so rewarding and normal to have Dane and the very crucial independence he gives me."
We were happy to hear she's been hanging with Chive On Bay Area a bit, first hitting up a San Jose Sharks hockey game, then the Matchbox Twenty concert (her fave).
"Ben Rossini and Charlie Seufert Chive On Bay Area bought me tickets to see my favorite band, Matchbox Twenty last fall in Mountain View, California. It was a fabulous night! I've been in love with Rob Thomas since they started getting famous because that's just after I was struck by my disease. Him and the band have really gotten me through some very difficult times in my life and I previously, I had only seen them pay live once, back in 1998. So, it was amazingly sweet that Ben and Charlie made that happen for me!"
During the holiday season she went to the Chive On Sacramento Christmas party, which looks like tons of fun!
Britanny said she's been working on getting a job, so please send her some good luck vibes when you have a chance.
Read the original story HERE.
Caroline will turn seven in November is heading to first grade this fall. Kinder in general ed. went very well for her, and she made lots of friends! She has been working through Applied Behavioral Analysis (ABA) therapy and it has made a huge impact on her communication, language, and mobility. At long last, she can communicate her needs, follow instructions, say lots of words – including her name – and she even yelled "momma" from her bed in the middle of the night a few months ago, bringing her mom to tears.
Physically, Caroline is making good progress. She's walking short distances independently and doesn't even use her walker when she's at home. She still rides in her Chive power chair to school and uses it for long distances since her stamina is still on the low side. At school, Caroline loves P.E., especially playing tag, and runs around with her walker shouting "tag" at all her friends. She will even tag people she passes by in the store. Being outside and swinging in her adaptive swing is still a fave, too. Although still using her g-tube for most of her nutrition, Caroline is showing great interest in food and has made excellent progress with her chewing and ability to coordinate the chewing/swallowing process. Pizza, spaghetti, and chocolate are her favorite!
Because of all of Caroline's progress, the family was finally able to go to Enchanted Forest, a small theme park near their home. Caroline went independently through the crooked house, rode the froggy ride, went down all the slides, and even drove the bumper boats! All that without ever even coming close to a sensory melt down. Her mom shared she has always dreamed of taking the kids to Disney Land, but never thought it was possible because Caroline would just be too miserable. Now she thinks it's possible and Caroline would love it!
We're so happy for Caroline and know she'll keep on pushing through those barriers!
Read the original story HERE.
Gianna turned six in March and has been doing well overall. She had a five-day stint in the hospital last June due to illness, and because of that illness, she started having dystonic movements that mimicked seizures. Fortunately, she is doing much better now.!
Next up for this little firecracker: a big trip to Denver for her aunt's wedding; starting first grade and working hard on communication, sign language, and walking independently. Gianna's mom says the van is helping SO MUCH, especially with all the growing Gianna's doing these days.
"The van has changed our life completely! We still appreciate y'all so very much!!!"
Keep up the good work, Gianna!
Read the original story HERE.
Lucy had surgery at the end of May and everything went great! After that, it was time to see the specialists who keep her on the right track – 12 in all. Every single one had positive reports! Her mom said she's never had better results, and her bladder and kidneys are healing and doing well.
Keep up the good work, Lucy!
Read the original story HERE.
Izzy's been spending time with her horse Juniper, working on her balance and swiping cherries off the cherry tree. Looks like a perfect way to spend a day!
Read the original story HERE.
She's been hospitalized several times this year for heart issues, one of which was so dire the crash team camped outside her room for hours at a time. Pearl had another hospital stay due to abnormal blood pressure. Thankfully, her meds are helping and she's pretty stable for now.
Unfortunately, her service dog Scarlett had some health issues, too, and they had been separated for a few months. It turns out, fellow Chive Charities recipient Colton lives halfway between Pearl and the facility Scarlett needed to get better, so Pearl stayed with the Darst family for a bit to be closer to her pup and spend some time with the amazing Colton. Scarlett's finally home again and Pearl says she forgot how much she depends on her canine bff. We're so glad they've been reunited!
Another cool note: Chivers from ChiveOn Chicago and Wisconsin Chive are helping Pearl look for a place of her own, which she says is no easy task. We know how much she appreciates the help, and it makes us so happy to see Chivers making the world 10% happier!
KCCO
Read the original story HERE.
She spent this year in an integrated classroom, which is so great for her because she's very social and learns from her peers in many ways. Her parents have been working closely with her school district to ensure she can continue on to first grade in a regular classroom setting. She still doesn't speak vocally but continues to work with a few different types of methods and devices to be able to effectively communicate.
Poppy uses her iPad and outdoor play equipment Chive Charities provided every day! They're just a few weeks into summer and she has taken every opportunity to play outside and go swimming. She is spending a month this summer with her mom and siblings visiting her grandparents and a cousin in Ohio.
On a less positive note, Poppy has started having seizures this year. These aren't too severe, happening about once a month, but are still very frightening for her and her family. These are mostly controlled with medication and we have an incredible team of specialists at Doernbecher Children's Hospital in Portland who are constantly working on ideas to improve her health. These are typical symptoms for kids with Angelman Syndrome but since she didn't start having seizures until after she was five, her parents thought she might have missed that part.
Keep sweet Poppy in your thoughts and join us in wishing her a wonderful summer!
Read the original story HERE.
According to her parents, Alyssa LOVED the boat ride, cool mist, and the roar of the water at Niagara Falls. Just about everything was wheelchair accessible, so Alyssa could enjoy so much on their trip. They cruised into Canada while they were on the road, taking the Chive Charities spirit right along with them.
KCCO, Alyssa and family!
Read the original story HERE.
"At 10:30pm, June 22, 2017, our sweet boy went to sleep, leaving this life. Merrick in my arms, me in Michael's.
Our hearts are broken, but the joy Merrick Bradley brought to this world continues on.
Merrick gives the gift of life to others in need through donation of his organs.
Merrick continues to blaze the trail in treatment of SMA by providing data to fine tune appropriate dosage of SPINRAZA for future recipients.
Remember the joy. The joy that his existence brought to this broken, sad and lonely world.
Rest peacefully sweet boy, monkey butt, fierce fighter and hero. Until we meet again, and you are whole."
Read the original story HERE.
Brian told us being able to load Zak and Lexi into the van in their chairs has made everyday adventures so much easier. Lexi gets to help with the shopping and errands and Zak enjoys his relaxing drives through town. They're so grateful for their van - not only did it help their family, it allowed them to pay it forward and donate their smaller van to the Car Santa of Kansas City, where it will provide transportation for another local family.
Way to make the world 10% happier, Burgdorf family!
Read the original story HERE.
Mom Joanie sends her thanks to the amazing Chive Charities donors who made it possible to take the girls on two road trips to Disney. "Seeing my girls faces light up is priceless!" she added.
We know how important making memories is for families battling rare disease, and we're thrilled to play a part in these exciting times. Best of luck with your next surgery, Emmy! Chive Nation is pulling for you.
Read the original story HERE.
We're pretty impressed!
-577 dedicated and trained Seedling Mentors provided 593 children challenged by parental incarceration with a weekly visit during their lunch hour on 113 campuses throughout Greater Austin
-Seedling's average mentor/mentee match length is 60% longer than national benchmarks
-To date, 36 Seedling students have been awarded scholarships totaling $192,500 for post-secondary education
Way to go, Seedling Foundation!
Read the original story HERE.
Her mom shared that, at seven years old, Audrina had never been able to get out of bed or get to the bathroom on her own. Each morning she would call through her baby monitor for help. But after the first night in the new house, she was the first person awake in the morning, and wheeling down the hall all by herself to tell her parents how much "she loved her new house." Now, she gets up on her own every day!
She has her own bathroom, her closet and dresser are at wheelchair-height, and she can get dressed on her own. Most people take these things for granted, but not Audrina. Every little step to independence is well appreciated. She told her parents, "I feel so much older in this house," and the first day she took a shower in her own shower, she said "Oh, Mommy. Did you ever just stay in the shower and let the water run on your back? It feels soooooo gooooood!" It was her first real shower! Audrina has always loved swimming because she can float and move without pain or limitations. Naturally, she wants to be a mermaid, and chose a mermaid theme for her bathroom.
Audrina and her parents send their biggest thanks to Chive Charities for the help that led to these amazing moments. KCCO, Audrina!
Read the original story HERE.
Rest and relaxation is so important for people who devote their lives to caring for others, and connecting with people on the same journey is incredibly helpful in so many ways. Cheers to Moonlight Fund for making both happen for these amazing ladies.
Read the original story HERE.
Elijah was born at 11:50 AM, weighing in at 5lbs 1.5oz, and Isaiah was born at 12:09 PM, weighing in at 5lbs 14oz. Both boys came home together on 06/01/2017 after spending five days in the NICU. Chris said they're all adjusting well and can't wait for his service dog to complete training and join their family.
Read the original story HERE.
He was 23 years old – a Navy bomb tech fresh off the battlefield in the Kandahar province of Afghanistan. He had sustained massive injuries from an improvised explosive device (IED) that detonated under his feet, and he wasn’t sure what the future held.
As a kid, Taylor was adventurous, outdoorsy, and calm under pressure – the perfect candidate for a high-intensity military career. He grew up in Cedar Falls, Iowa, camping, rock-climbing, and water skiing. He was a natural leader with a killer smile.
In 2008, Taylor enlisted in the Navy and trained to become an Explosive Ordnance Technician (EOD), the first in line to detect IEDs. He completed training in 2009 and deployed to Afghanistan in 2012. It was all going great, right up until May 3.
“As soon as I stepped on it, I knew. There was a moment, then I heard the blast. I felt the heat. I knew I had lost my legs.”
He was right. Three days after the blast, Taylor became only the fifth person at Walter Reed to ever survive a four-limb amputation – he lost both arms in the explosion, too.
His recovery progressed remarkably fast, his girlfriend Danielle by his side every day.
Just three weeks after his accident, Taylor was fitted for prosthetics. He had worked hard, and it was paying off. Around that time, he met theCHIVE’s own John Resig, and was introduced to the wonderful world of Chive Nation.
As he’s known to do, John wanted to help. Fortunately, Taylor was pretty set with medical care and support, so John pushed a little. “O.K., Taylor,” he said, “If you could have anything in the world, what would it be?” It took a little digging, but Taylor finally caved. Turns out, he had a pretty sweet wish.
“I’ve always dreamed of having a log cabin in the woods on a lake. A traditional wood cabin on the outside with a modern interior. And good lighting. Good lighting is important. My girlfriend Danielle and I, we live simple lives but we’ve always loved being active, spending time outside with our families.”
John sounded the call and the wheels began to turn.
“When Taylor returns, I want theCHIVERS to have provided the down payment on his dream cabin. We have the best community on the internet and I’m setting the goal at $30,000.”
The original post required 15 updates to share the dizzying progress. We hit the goal in about an hour, and by the next day, Chivers had raised $250,000 for Taylor’s dream cabin. Two hundred fifty thousand. Dollars.
A lot has happened since then.
Taylor has been working toward his bachelor’s degree, and this December, he’ll graduate from the University of Northern Iowa.
He started a nonprofit in his hometown that works to promote collaborative learning, creative design, and manufacturing for people of all ages and skill levels. Visit Cedar Valley Makers here.
He partners with seniors at Cal Poly, using 3D modeling and printing to develop advanced sockets for prosthetic limbs.
And he’s been working on a private social media platform for amputees, focused on sharing their stories, supporting each other, and building bonds with people going through the same experiences. [No pic here because it’s private, of course.]
No matter what, Danielle has been by his side.
In fact…
They got hitched!
And traveled all over the country.
And that cabin in the woods?
It’s coming. Taylor and Danielle close on the land next week and should start building right away. It’s happening, y’all, because of YOU.
Don’t worry, Taylor and Danielle aren’t riding off into the sunset. He promised John the exclusive, so you know it’s going to be good. Much more to come with this amazing story.
And thank you for making this hero’s dream come true. It was the first time theCHIVE held a flash campaign for a veteran. It was also the first time the Chivers Hulk-smashed a goal 8 times over. It really elevated this community from a group of like-minded do-gooders to a philanthropic force that was beginning to get worldwide recognition.
Since Taylor, Chive Charities has provided grants for 33 veterans and veteran service organizations, impacting hundreds of lives. It takes generous people like you to make the world ten percent happier; please consider becoming a monthly Green Fund donor and changing the lives of true American heroes just like Taylor. Click HERE.
P.S. Thanks to Tim Dodd for his amazing photography!
Read the original story HERE.
She will likely be in a cast for 3 to 4 weeks, in a brace for another 4 weeks, and will need intensive physical therapy during recovery. Her mom will be taking FMLA over the summer to stay home and care for her, which is truly a blessing. Keep Rylan in your thoughts as she goes through a tough few months of recovery.
Read the original story HERE.
Our friends at Special Kids Care are super close to the Oklahoma Chivers, and their connection never ceases to amaze us. Check out what happened when Miss Jo and the crew were on vacation:
"While we were gone on vacation, someone BROKE IN TO THE DAYCARE AND DID THIS!!!!! New sink, plumbing leak fixed, new faucet with sprayer AND beautiful quartz countertops. You have to know that the old countertops wouldn't seal in the back and leaked down the wall. The sink wasn't deep enough to make pasta and the sprayer leaked. John makes the best meals for our kids and he has always stressed about these things because he is meticulous about doing things right and sanitation. This is beyond our dreams. He came over literally dancing and he can't wait to get in there and cook now. We are so humbled by this incredible generosity. I can't, literally, think of enough ways to say THANK YOU!"
We're not crying, YOU'RE crying.
Read the original story HERE.
Kyndle racked up in the local Cuties For A Cause Pageant, winning overall Prettiest Smile Grand Supreme and Fundraiser Supreme. The pageant raised money for a local girl battling leukemia, which is SO perfect for big-hearted Kyndle!
Read the original story HERE.
Cash's mom Ashley shared great news with us! "The first EVER FDA approved treatment for SMA was approved on 12/23/2016 and Cash was one of the first in the country to receive the treatment post-FDA approval! The center where we are going for treatment, Sutter Medical Center, Sacramento, under Dr. Asaikar, has been doing a lot of PR stories on Cash since it's a new treatment and he was the first to be treated at their facility. We're already seeing amazing results and improvements in him! It's an answered prayer!!!"
Stay tuned for more on this – we have a feeling it's going to be huge!
Read the original story HERE.
We're sad to say he learned his lung condition is indeed terminal, and will in fact take his life one day. He has been evaluated by five world-renowned transplant centers, all of whom said his case is too risky. David went to the Cleveland Clinic for transplant evaluations and other outpatient transplant-related appointments, but fell ill hours after landing in Cleveland and was rushed to the emergency room. As a result, many appointments and scheduled tests were canceled.
He has decided that if the Cleveland Clinic also deems his case too risky, he will no longer chase that option. He vows to live his life the best he can and share time with friends and family, doing the things he loves. Please keep David in your thoughts and prayers.
Read the original story HERE.
We're so happy he's getting out and about, and can't wait to see where he goes next. Keep sending those pics, Douglas!
Read the original story HERE.
"I had surgery to remove my gallbladder recently and the kids have been wonderful. Two days after my surgery, I was allowed to remove my bandaids from my incision wounds and Mason wanted to help! He insisted he was Dr. Mason. Lizzy jumped in to help, too. At least once a day he will come over to me and ask to check my ouchies."
Sounds like we have some future doctors on our hands! We're so happy to hear these little fighters are doing great.
Read the original story HERE.
Cooper has had a fantastic year! After having extensive brain surgery in October of 2015, he has been nearly seizure-free! Furthermore, he hasn't been in the hospital for the past year, which is a huge difference from where he was prior to surgery. His family moved into their new home in July 2016 and it has made a drastic improvement of day-to-day life for Cooper. They now have a barrier-free shower and shower chair, and can safely move him in and out of the shower freely. Furthermore, Cooper is no longer limited to one floor of the home. With the addition of the elevator, they can transport Cooper to the lower-level of the house so he can enjoy movies and games with his siblings and family. They also use the elevator to transport Cooper is in his standing device, which allows him to maintain physical therapy for a long period of time, numerous times a day, and still be around the family.
Within the last year, Cooper has begun giving high-fives! With some prompting and a huge smile, Cooper will reach out and grab the hand in front of him. He really gets a kick out of doing this and usually will laugh for long while afterward! He'll be starting 4k next year, so these improvements are happening at the pefect time.
Sending virtual high fives to Cooper and his family!
Read the original story HERE.
Read the original story HERE.
Here's what staff had to say about their new trail: "The trail is a peaceful place. We feel very safe along the trail - the fencing provides much needed safety from natural obstacles - a deep ravine and occasional stray dogs. It's wonderful on a hot day! The shade from the forest cools our lessons. It's a favorite activity for our riders, volunteers, and instructors."
Read the original story HERE.
Carson's mom told us PT has turned into the hightlight of his night. We're so happy to be part of his incredible journey! Keep up the good work, Carson!
Read the original story HERE.
On April 20, 2016, Chive Charities had just announced a $64,000 grant to send 10 veterans to High Fives Foundation’s Military to the Mountains (M2M) program, a 10-week initiative proven to restore physical and mental health through adaptive training and restorative experiences. We had seen the difference M2M made for Jake Schick and Chris Wolff, both combat-injured veterans with multiple physical limitations, and knew we had to help.
Fast forward to April 3, 2017: 22 veterans descended upon Lake Tahoe, California for a week of skiing, five-star dining, and the kind of camaraderie they knew from serving in the military. They had spent nine weeks working at adaptive training facilities near their homes, building strength and skills needed to ski despite their physical limitations, and it was time to put all that effort to the test.
Participants enjoyed several perfect days of skiing, and took advantage of nearby Woodward Tahoe indoor action sports facility when the weather was uncooperative. Goals were met and surpassed, and the word “ability” was completely redefined.
Returning Army veteran Will Hoyum, who attended Military to the Mountains in 2016, was thrilled with his improved endurance.
“[Last year] I was only able to ski 30 meters unassisted before falling, and that was the same on the morning of the first day this year,” said Hoyum. “This year I skied almost 200m! I’m starting to get it, this is amazing!”
Military to the Mountains is organized by High Fives Foundation, whose mission is to provide resources and inspiration to mountain action sports athletes with life-altering injuries. We’re so excited for each of the program participants and their renewed self-confidence and hope, and thankful to High Fives Foundation for supporting our nation’s veterans.
If you haven’t signed up to become a monthly Green Ribbon donor, what are you waiting for? We’ve got lots of lives to change and we need your help! Click HERE to start making the world 10% happier.
Read the original story HERE.
She's had so much fun horseback riding, going to school, and attending birthday parties. Now that the weather's nice, she's been outside more and more. She went to an all-abilities night at the local iFLY and is trying out snowboarding through the Shriners rec therapy program. Lots of exciting times ahead for Izzy!
Also, her family's been advocating for some of the state programs Izzy needs that are facing funding cuts. Read more about that work here.
Read the original story HERE.
Obviously, Matthew has been using his wheelchair to do lots of fun stuff! There's been some good news on the medical front, too...
Matthew met all of his goals at rehab and was discharged from the program! YAY!! He will still receive physical, occupational, and speech therapy at school, but his weekly trips to St. John's are done! He's not completely back to his baseline from before his illness – his strength, endurance, and balance are still a bit off, but he has come a LONG way!
When Matthew was hospitalized, doctors discovered he has a heart condition called Wolff Parkinson White. He's seeing a pediatric cardiologist and has had to wear 24-hour holter monitors a few times due to a rapid heart rate. At this point, they are monitoring the situation closely. But the good news is the mitral valve prolapse and the fluid around his heart have improved greatly!
Matthew's lungs have been through a lot lately. A few recent colds have been scary but haven't turned into anything more serious. In the near future, he'll be getting a spinal tap, MRI, and CT, but with his lungs being so fragile, doctors have been concerned they wouldn't tolerate the sedation necessary for these procedures. It's been more than a year since he's had these tests done, and his family is anxious to check his levels and see his scans. Because it's been so long, they're much more nervous about it than usual, so let's send Matthew and his family positive thoughts and a great big Chive Nation hug for good luck!
Read the original story HERE.
There was food – barbecue, baked goods, libations. There was a big raffle – more than 50 items were donated, including an American flag made from recycled fire hoses. There was music – a traditional bagpipe corps and then a live band. There were friends – lots and lots of them. And there was Dan.
Priscilla from theCHIVE PA stopped by to represent theCHIVE and Chive Charities. She was clearly moved by the incredible outpouring of support, sharing the numerous messages of gratitude attendees expressed to her. Assistant Chief Jeff spoke to the crowd and offered his thanks to theCHIVE and Chive Charities for the donation, story write-up, and help spreading the word about the event.
After Jeff spoke, Dan got up to say a few words. "His speech was just...powerful," shared Priscilla. "He had some amazing words of wisdom, and he started to cry when he was finished."
All told, the event raised more than $27,000 to help Dan fight cancer. Way to go, everybody!
Keep fighting, Dan. We're rooting for you.
Read the original story HERE.
Read the original story HERE.
It's been a long road for Liam, but he's not letting Wolf-Hirschhorn syndrome keep him down. His mom Cheryl told us he recently learned how to drink from a straw and has begun the early stages of feeding himself! They're so excited and very proud of Liam, and so are we! Go, go, goooooo Liam!
Read the original story HERE.
He switched to a new school this fall and has made so many new friends and reconnected with some old ones from preschool. He has become so popular, in fact, his teacher had to create a schedule so all his friends would get equal turns to help him at school! He's been working on standing and walking, and he's very excited for the warm weather so he can ride his bike with Logan and Kaylee. This summer, the family is planning to take a tour of parks Chive Nation worked on so Griffin can check out more great Chive Charities projects. And lastly, he received his Chive bear from Big Poppa Chive and was super excited to meet another new friend. Go, go, GO Griffin!
Read the original story HERE.
Read the original story HERE.
His dad shared with us that he has been going to Minneapolis every 6 weeks since last December to participate in a new research trial and it seems to be going well. Doctors take tiny skin cells from his sister Avery, apply them to a bandage, and place them on Reid's chronic wound areas. The grafts are taking well and it has very little impact on Avery.
Reid's dad also said they're very excited about new research Reid's doctor has recently published. "Dr Jakub Tolar and his team have been able to edit the gene which causes Epidermolysis Bullosa (EB). They have done this in the lab on skin biopsies taken from each of the kids that have been through the bone marrow transplant. The article, while very complex, proves that this editing of the gene works and is a major breakthrough. Although the research has been on EB, this can be used for any genetic disease. The gene editing is done on your own cells, so no need for chemo/radiation, rejection, etc. Here is a link to the article and I have attached a simplified version that we had asked for as the publication is very hard to understand. The only thing in the way of this treatment being reality is money (labs, equipment and FDA). Dr. Tolar wants to be very transparent that he nor his team will receive any of the money needed and it is all to get the trial running.
http://www.nature.com/articles/npjregenmed201614
We want to say thank you again as everything that Chive Charities provided for Reid has been life changing. It is an incredible thing that Chive Charities and all of the supporters are doing."
Awww, thanks Underwood Family!
Read the original story HERE.
We just got a super quick update from Trey's family that he was recently diagnosed with myoclonus, but they're hopeful it will be managed easily with medication. On the good news front, Trey went to prom! He looks so dapper in his bowtie, right? KCCO, Trey!
Read the original story HERE.
She recently went to San Diego for a post-spinal fusion check-up and was cleared to take her neck brace off for short periods of time throughout the day. She's been LOVING IT. She went swimming without her neck brace and tried to stand on the pool steps, scooted around on the steps, and loved just chillin’ in the sunshine. She worked up such an appetite she ate her whole bowl of pho that night!
Just a few weeks ago, Zoe was a flower girl in some family friends’ wedding. The pictures are nothing short of awwwwwww-inducing. We’re so glad Zoe is doing so well!
Read the original story HERE.
Thank you once again to our friends at BraunAbility, and to our amazing Green Ribbon donors. Chive Nation is absolutely making the world 10% happier.
Read the original story HERE.
Jocelyn's mom said they were able to find specialists to treat her condition in Denver, which is nine hours from their home. Before they got their new van, that kind of travel would have been out of the question, but now they're able to see the doctors every six months. They've also been able to take Jocelyn to the Denver Zoo, Children's Museum, Museum of Natural history, and lots of parks.
Physically, Jocelyn is making some progress. She goes to Headstart preschool twice a week, taking her wheelchair and walker. She's getting better at walking but still prefers to travel places with her chair. Her mom said, "Thank you so much for helping our family. We really appreciate it and love sharing what Jocelyn can now do." Thanks so much for the update - best of luck with your travels!
Read the original story HERE.
Having the same equipment at therapy and at home makes it so much easier to keep up with his routine and get closer to his goal of walking unassisted. We can’t wait for that day, Brayden. Keep up the good work!
Read the original story HERE.
Ever since the helicopter crash that nearly took his life, his leg doesn’t circulate blood very well, so healing from any kind of wound is very delayed. He’s been fighting a foot infection for almost a year, has been on seven rounds of antibiotics, had surgery to clear the infection, and is now on another six-week course of IV antibiotics. He hopes to go on a fun family vacation next month, so let’s send Billy some good vibes for fast healing. Hang in there, Billy!
Read the original story HERE.
April sent an update and a lot of awesome pics to show Chive Nation how much their lives have improved since we first met them – they’re involved with several nonprofits, April’s back in physical therapy and will be having spinal surgery again soon (good luck, April!), they’ve been traveling, enjoying their family, and finally getting some good sleep.
“It means so much after drastic injuries to have such an overlooked luxury like comfortable sleep. Lack of sleep affects your emotional and mental capacities and also affects your desire to keep a decent level of physical activity. And that defiantly means the world to the both of us; before and after our injuries.” Great news, guys! We wish them all the best.
Read the original story HERE.
She goes to the mall every weekend – for shopping and just to get out of the house, and she's been to the movies several times. She also recently saw Miranda Sings live in concert, which was so fun! The van also makes it much easier to get to doctor appointments and home from school if she's not feeling well. Alayja will be having surgery once again this summer, so we're all wishing her well and looking forward to a great update in a few months!
Read the original story HERE.
She's been really, really busy, in fact. Within the past few months, Aubree received an adaptive stroller/wheelchair and a sleep-safe bed. She's starting to work on communication and loves music, and she had another round of genetic testing at the beginning of this year.
"We weren't expecting more testing," shared mom Desiree. "We had no idea they wanted to do more, so it was a shock when we woke up to that call." The family was hoping for more answers about Aubree's illness, but the latest round of tests didn't provide any new information. Next up for Aubree is a muscle biopsy, which they hope will shed more light on what's going on with this precious girl.
Read the original story HERE.
“This tremendous blessing has forever changed our sweet Belle’s life & ours as her parents. We have always had the mindset of not letting her diagnosis define who she is & it limiting her ability to partake in all life has to offer. With the addition of the van we have been able to still keep up with her active schedule but now it is so much easier to get her out and about. We celebrated Thanksgiving with family in Perdido Key, Florida.
We also went on Belle’s dream trip, a Disney Cruise, provided by Dreams Come True. We were able to drive down to Orlando where the ship was porting out of in the van. We spent Christmas at home in Jacksonville, then traveled in style to Charleston, South Carolina where Caleb’s family is from for a post-Christmas celebration with his great big family. Unfortunately, a few days after returning back home to Jacksonville, Belle came down with a respiratory infection. We were admitted and turned into a 15-day hospital stay. But the great news is she got better and returned back to her baseline! We are so happy she is back to herself! She celebrated her 4th birthday on January 23rd with an art inspired birthday bash, which entailed painting on canvases with her cousins and friends at home in her 'art studio.'
We have been so honored to have been a recipient of this van by Chive Charities. It has allowed us to put our mind at ease in knowing that we have the ability to travel safely and let Belle experience all this life has to offer. We are forever indebted to your organization. And thank you for letting us share Belle’s journey. I know I am a little biased but she has forever changed my outlook on life. So, thank you for the opportunity for us to share our love we have for her. Thank you times a million from the Dunlap family.”
Read the original story HERE.
Now that Alex and her family have an ADA-accessible van, they've gone to the beach, trick or treating, track meets to watch Alex's sister run, local parks, the arcade for her brother's birthday, and all her doctor appointments with so much ease. We're so happy we could help!
Read the original story HERE.
He's still working full-time at Garland Fire Department in the Fire Marshall's office, and he's keeping up with his workouts, rowing and doing at least a mile around the track when the weather is nice enough. Devon and his crew are prepping for the 4th Annual Firefighters Ball, which benefits firefighters and their families facing financial hardship due to off-duty injury or illness. He's also keeping his eye on emerging news in SCI research, hoping for new developments that could help his injury.
"Things have been pretty good, a whole lot better than I deserve," he said. "Give my thanks and love to everyone there for all that y'all do."
KCCO, Devon!
Read the original story HERE.
Madi's mom said it's been nice to see her having fun and not spending so much time in medical offices. She really enjoyed a recent trip to the beach, and is doing great with her special needs cheer team. Soon, she'll be starting hippotherapy and aqua therapy again, which will make her super happy. Two of her favorite things are horses and water! Enjoy your fun time, Madi!
Read the original story HERE.
Eloy's mom explained her son had been experiencing knee pain for a long time, and was scheduled to have surgery in March. Unfortunately, doctors discovered a nearly 70-degree curve in his spine and a previously undiagnosed bleeding disorder, making the procedure much riskier. Eloy's family us understandably worried, and we wish them all the best as they prepare for this journey. We'll be sure to update you as soon as we have news, but until then, send them some positive energy if you can. Hang in there, Eloy!
Read the original story HERE.
Colton has fully recovered from a nasty fall where he busted open his chin and sustained a concussion. He has resumed therapy 2x a week and loves every minute of it. Starting in March, he will have therapy 4 times a week, adding in music and rec therapy to his OT and PT schedule. Colton goes back to Philadelphia in mid April to get new leg braces and to schedule his next rounds of surgery later this year. He's doing great in preschool and his mom said he still talks about when he went on a plane to Texas and saw Batman, Robin, and Wonder Woman. He hopes the he will get to meet them again, as well as Iron Man, Grundy, The Flash, and Green Arrow. Looks like we've got some work to do, y'all!
Keep up the good work, Colton!
Read the original story HERE.
Bryce's mom said he's been falling behind in reading and writing, but they hope some extra effort will help him catch up and stay in his inclusion class. Sadly, they've noticed his condition is deteriorating quicker than they expected. The good news is his speech is continuing to improve, so he can tell his family where he's hurting and what he needs. Let's keep Bryce in our thoughts as he works hard to stay healthy. Hang in there, buddy!
Read the original story HERE.
Chivers helped raise enough to begin construction on a one-story ranch which would be perfectly accessible for Audrina.
Audrina's parents recently shared some exciting news - that dream house is now getting closer to completion. "We still have work to do in order to finish the project and once we close on selling our home in East Pembroke we can use that money to finish the new house and move in! So much has been accomplished on the house up to this point!! We have set a goal for June 1st for moving in, but we hope to actually move in sooner than that if all goes well. Along the way, many generous people have stepped up to help with the build. In the past two years, she has endured a few more surgeries and every day that goes by is a confirmation of why we started this project in the first place."
Read the original story HERE.
We recently heard from La'Niya's mother who let us know that La'Niya is doing well. "We have not been traveling due to the season/ crazy weather! However, we are planning a visit to Morgan's Wonderland for Spring Vacation! La'Niya will be 14 this Sunday!" Keep traveling the world, La'Niya!
Read the original story HERE.
Read the original story HERE.
She's battling a pretty tough infection, facing several grueling surgeries, and struggling to keep up in school. Lucy's mom also told us she's really into snail mail right now, which is where YOU come in! We want to flood Lucy's mailbox with words of encouragement and hope & we know Chivers are up to the task. Get out your markers and glitter and drop Lucy a note to:
Lucy Hott
P.O. Box 20036
Albuquerque, NM 87154
Let's show this family how many supporters they have all across the country!
Read the original story HERE.
Her mom gave us a glimpse of what Emmy's been up to lately, and it sure sounds like things are going well for this sweet little girl.
Some of her current faves:
--"Let it Go" from the movie Frozen: "When we get in the car and before I can even get her in her car seat and the car started, she is yelling from the back of the van for me to play it in the car, and when the song is close to the end, she starts yelling to listen again. Ellyna is so over it now, telling her to be quiet and it hurts her ears. Ha ha, sisters."
--Doing everything older sister Ellyna is doing: "When I ask a question, she waits for Ellyna to answer so she can say the same thing. She has to do everything Ellyna does and plays with everything Ellyna plays with."
--Being independent and wanting to walk on her own: "When I'm carrying her or go to pick her up, she screams 'No Mommy, I walk!' She would rather be on the floor walking on her little legs that she does have."
--Copping a 'tude: "She has got that attitude of a 3-year-old already, which she learned from her sister. At times she is so cute when she gets upset with me that it's hard not to laugh."
--Mom's iPhone: "She is always asking me to FaceTime [her cousin] Charlotte, her Mammy (great-grandam), Grandma (my mom), and Poe (grandpa). Oh, and she loves taking my phone and take selfies.
--Making mischief: "She is always on the go, getting into things she shouldn't be, like the refrigerator and mommy's things. She never stops and she thinks she can run away from me when she is in trouble or has to do something she doesn't want to."
We're so glad Emmy is doing so well, and so thankful for Chive Nation's support. KCCO, y'all!
Read the original story HERE.
The FDA just approved the first ever drug (Spinraza) to treat SMA (Spinal Muscular Atrophy)! It hasn't been approved for coverage by their insurance yet, but they're working on making it happen for Hanna any way they can. Recently, Hanna and her dad attended the annual "Daddy Daughter Dance" and had a blast wheeling around the dance floor. They're still loving their van and can't thank Chive Nation enough for the gift!
Read the original story HERE.
Having an ADA-accessible van is so important for people who rely on wheelchairs for their mobility. Thank you to Chive Nation and BraunAbility for this incredible gift for Kayleigh and her family!
Read the original story HERE.
"Evie has been doing really well. She is still on the antibiotics for the staph infection, but that is still going in the right direction so we are hopeful to be finished with them sometime this summer. Her physical therapists (private and school) are seeing progress with her standing and we have recently seen her sitting cross-legged on the floor and bed for about 30 seconds to a minute give or take. That is huge progress for Evie. This week we will be starting aquatic therapy with her PT and I'm very excited."
"We have been working with her on communication and getting new pages set up for her. She loves listening to Jolene by Dolly Parton and Pentatonix. Not sure where that came from, but I'll take it. She also laughs at Shake it Off by Taylor Swift."
Read the original story HERE.
Read the original story HERE.
"Zoe has been very busy with school and assessments for her IEP. She's starting adaptive P.E., getting back into weekly PT, and starting a music/dance class all next month! We're so happy and appreciative to have Zoe healing so well after her spinal fusion and all the other hiccups that come along with OI. Thank you all for being in our lives and thinking of my sweet girl. Your positivity, thoughts and prayers are so helpful to us!
This is a picture of Zoe eating a gigantic ice cream cone covered in chocolate and sprinkles at the Tet Festival. She munched on Bulgogi fries and a lychee raspberry lemonade (before the ice cream), rode a horse tornado, went through a fun house, and made a friend, Justin, that hooked us up with a ton of free games (and, in turn, prizes!)!”
We love hearing such good news about this special girl. KCCO, Zoe!
Read the original story HERE.
After a diagnosis of Trisomy 18 and being told she may not survive her first few hours of life, Alyssa had other ideas. Even though the median lifespan is five to fifteen days, Alyssa is now 8 years old! Checking in with her mother, she let us know that Alyssa's spirit is as tenacious as ever.
Alyssa recently had to undergo surgery for her back and the recovery has been on the rough side. Trish shared that despite this, Alyssa has settled down and is doing well. With excitement, Trish exclaimed, “The princess warrior has won another battle, PTL! Thank you for all the prayers and well wishes.” KCCO, Alyssa!
Read the original story HERE.
“He’s doing great, he has become more independent. He enjoys his lift in his room and he’s able to go up and down at his own. Life is so easy now when we go somewhere. He loves his van.” We're so glad we could make such an impact for this family...the Chive Nation is pretty awesome! KCCO, Jonathan!
Read the original story HERE.
Taytem is still loving her bed and has been sleeping well in it ever since she received it. Chamonix jokingly said, “She won’t sleep anywhere else haha. I try to get her to take naps in my bed with me and she says no mommy, my bed.”
Taytem has her big appointment in Minnesota mid-February and Chive Nation’s thoughts will definitely be in full support mode during that busy time!
Read the original story HERE.
“Shelby forgets to breathe about 8 to 10 times.” A recent sleep study revealed Shelby is really struggling with obstructive sleep apnea, so she has begun using a CPAP machine to monitor the episodes and bring some peace of mind to her family. Mom Victoria shared that Shelby had a rough beginning adjusting to this new machine, but is hopeful that she will adjust well with a little more time.
No matter what, Shelby continues to radiate with her infectious smile! She's doing better with her feeds, putting on weight, and the Huerta family is excited about how well Shelby is doing! We wish them well – and lots of great sleep soon!
Read the original story HERE.
“These four months have been a roller coaster, but they have made us a stronger family, smarter caregivers, and more to be grateful for than ever before.”
Matthew getting sick again will always be a concern for his family, but Matthew has really made huge strides lately! His lungs have started to sound much better and his skills and strength levels have gotten closer to his baseline. Just in a week’s time, Matthew’s eating, drinking, and sleeping habits had improved significantly! His family shared, “He’s (we’re) loving and living life to the fullest in this moment.” KCCO, Matthew!
Read the original story HERE.
We recently checked in with the Kulas brothers. “They've had lots of appointments and sickness this winter so we've been busy, busy," Mrs. Kulas told us. "Thank goodness for our safe reliable van to get them to and from where they need to be to get better!”
Read the original story HERE.
Heather let us know that Megan has continued to explore her newfound freedom, made possible by the new van. “We sure have enjoyed the convenience of the van, and make more frequent trips to her favorite Walmart. The van is also allowing us to get out in the winter, which was almost impossible before. We still owe so much gratitude to Chive Charities and Braun. I’m hoping in 2017 we can actually take a roadtrip vacation as well. Thanks again from the bottom of our hearts.”
We can’t wait to see pictures from your roadtrip, Megan, and from your many adventures to come!
Read the original story HERE.
Merrick has been accepted to a clinical trial that allows him to take a groundbreaking medication to help with his treatment for his diagnosis of SMA.
“We have seen increased motor ability in his head and hands especially, but also in his legs and torso. He is opening his eyes more, and wider. His voice is getting louder and he has started moving his tongue, lips and jaw, again.” These are all unimaginable feats for someone with such an aggressive neuromuscular disease.
Read the original story HERE.
Jennifer let us know that Tia has been staying strong while going through “lots of hospital stays and doctor appointments lately. She also recently broke her leg and is receiving chemotherapy injections twice a week.” Hang in there, Tia. You have the whole Chive Nation behind you! KCCO!
Read the original story HERE.
"It was sudden and unexpected. Although we are devastated, we find solace in the fact that Xavier defied the odds and was able to live life to the fullest. He made us better people and had so, so many people who loved him. There are never words that can express enough thanks for what Chive Charities did for us. We would like to donate his items. His Chill-Out Chair will go to Maryland School for the Blind. Again thank you so much for being one of his champions and for sharing his story. Without you, many people would not know what's Schinzel-Giedion syndrome is.”
-Adrianne, Anthony, & Quinn
Xavier, it was you who was the champion, and you will continue to be an inspiration to us each and every day.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Due to a significant change in her walk, Rylan needs to undergo surgery on her right foot this June. Rylan’s mom explained, “the surgery is called bilateral heel cord release. They will go in and stretch her tendons.” Rylan will be in a cast and brace for several weeks following the surgery, in addition to requiring extensive therapy. There is the possibility that Rylan will not walk again after the surgery, a possibility that keeps her parents up at night. However, we’re certain Rylan will show the same determination and willpower she has shown in the face of every obstacle life has thrown her way! Chive Nation is sending you positive vibes and thoughts, Rylan! KCCO!
Read the original story HERE.
Mom Valerie told us Hannah recently went through a straight 9-hour spinal surgery. NINE HOURS. It was so hard on Hannah’s soft bones, her arm was displaced as a result of being on her back for so long. Until recently, Hannah had no function in that arm, so it was particularly damaging, and meant yet another surgery to try and regain that progress. Up next: a long and grueling recovery over several months. As we've all come to know, Hannah’s strength is undeniable and the Chive Charities family will be supporting her all the way!
Read the original story HERE.
That's when Chive Charities stepped in and asked Chive Nation to make Liam's holidays special. He was beyond excited by the tremendous amount of cards he received this holiday season! Liam’s mother, Cheryl, gave us exciting news about the impact these cards had on Liam. “Liam has finally started vocalizing! It started on Christmas day while I was showing him all of his cards. He is now starting to babble and says “yeah” when asked a yes or no question and shakes his head for no.”
“I am really very grateful for all of the kind hearts who took the time to send some Christmas cheer my little angel's way.”
Check out the video of Liam vocalizing below. We're so proud to be a part of your progress, Liam!
Read the original story HERE.
It has been an extremely difficult time for the Herring family this holiday season but Tyree continues to smile and inspire them daily. According to Cassandra, “His hearing and vision were screened recently and he still has both, so he can hear us say what a Super Hero Warrior he is and how much he is loved.”
Even though Tyree is currently stable, Cassandra told us that his health has been declining. Tyree and his family could really use your thoughts and support during this very challenging time. You can reach out to Tyree and leave a word of encouragement HERE.
Read the original story HERE.
“Alexa has started a physical and occupational therapy with a program that focuses on neurologically impaired patients. She has made absolutely INCREDIBLE strides with them. Having the chair Chive Charities gave her a good foundation with head control. She went from being able to hold her head up for a few seconds to being able to hold her head steady for nearly a minute or more (depending on the incentive, haha!!)”
However, Alexa still struggles with complications from her disorder each day. She has been experiencing seizures that have become more severe and will oftentimes result with her inability to breathe temporarily. Alexa’s mom, Ashleigh, told us “because of her low muscle tone, she’s prone to pneumonia. So, when she gets a little cold, we work tirelessly to keep all the junk thin and easier for her to cough up. There are so many things that we as “normal” people don’t even think about and therefore take for granted. And yet, even when she’s sick she’s smiley and looking for trouble.”
Alexa, it is that contagious smile of yours, along with your amazing joy for life that truly helps make this world 10% happier!
Read the original story HERE.
She explained that it is “due to a bad curve in his spine because of AVM.” She expressed positivity stating, “I know God has his angels around us.” The surgery is tentatively scheduled for sometime in February. Gershon, you have the support of Chive Nation and we wish you the best!
Read the original story HERE.
“Last month they were able to learn how to use Amazon Echo Dots to their advantage and have found many uses for these great tools in their everyday lives.”
They wanted to thank our amazing Chive Charities members whose donations helped make this possible for them!
Read the original story HERE.
Ian's family put together an awesome video to share with Chive Nation that illustrates Ian’s inspiring abilities:
Ian's mother, Jessica, reached out to us about the amazing progress of his communication abilities with the help of his iPad and skills learned from attending an AAC conference. “Over several months Ian has been able to communicate with us so much and prove all those professionals wrong who said he was going to have the capabilities and intellect of a baby his whole life”
“We really can't thank Chive Charities and all of the amazing donors to this charity enough for making this happen for Ian!! It has completely changed his life and ours as well. It's funny how an iPad seems like a really simple request to some, but can mean the absolute world to someone else.”
The Fletcher family has been inspired to go help other families with children struggling to find their voices from Pitt Hopkins Syndrome. “We will continue to pay it forward and hope we are able to impact others in the way that Chive Charities has impacted us. Thank you, thank you, thank you!”
Read the original story HERE.
“She’s doing great, mentioning her neck doesn’t feel “soft” anymore after her final fusion. Her pins sites are healing so beautifully too!! She’s able to sit in her wheelchair again and is really looking forward to starting 1st grade after Christmas break."
We’re so happy you’re doing well, Zoe! With or without a halo, you will always be an angel to the Chive Charities family!
Read the original story HERE.
She wanted to let the members of Chive Charities know, “We use it constantly, every single day!”
We can’t wait to see what the theme will be at your next birthday party, KCCO Lucy!
Read the original story HERE.
“Merry Christmas & Happy New Year to everybody at Chive! We are forever indebted to you guys!
Love,
The Dunlap family”
Read the original story HERE.
According to Tasha-Kay, Lucy will receive her dog when he is about 7 months old. Lucy is already attending classes so that she can be prepared on how to handle him properly. She observed at the initial meeting how gentle he was and that he appeared to be such a quick learner. Lucy was especially impressed with how he can already pick up his own leash when he drops it! It sounds like they are going to be a great duo and a perfect fit!
This dream of hers would not have been possible without the amazing support and generosity provided by our Chive Charities members! We are so excited about you finding your new furry companion, Lucy!
Read the original story HERE.
Luke’s mother Anita told us that Luke is looking forward to going back to school as soon as a private duty nurse is able to accompany him each day.
The Prokay family also just bought a new house! Anita told us that “Luke is loving the extra space we have at this house where he can roll around.” Luke also had a blast at the beach this year using his new beach wheelchair for the first time, as well as been enjoying therapeutic horseback riding. And most recently, Luke and his family “had a wonderful time at the 4th Annual Chive Charities Green Gala.” We enjoyed seeing you this year and can't wait to see you next year, Luke.
Read the original story HERE.
It was an exhausting process and took a whole lot out of her. Zoe's mother Chelsea said, "It wasn't too bad to get the halo off until they had to start removing the pins. Lots of tears but she's happy it's off."
Read the original story HERE.
Kelly told us that “It was one of the most wonderful experiences our family has had aside for getting an awesome van!”
Unlike last year, the Clemence family will be enjoying the Christmas season at home and they’re thrilled about it.
Read the original story HERE.
Other big news for Cash is that he just turned 7 this month!! Cash’s mom told us that they started the celebration early by going hiking at Big Trees National Forest! Cash’s mom told us, “it was awesome because the entire hike was wheelchair accessible! We were able to see huge beautiful trees and go through, over, around and under them!” But the celebration doesn’t stop there for Cash’s big day, the family is packing their suitcases and heading to the beach at Santa Cruz for a few days. We can’t wait to see pictures from it!
Read the original story HERE.
With rising health concerns for Matthew, his mother Susan told us that he “will most likely return in December for another surgery.” Please keep Matthew in your thoughts and send strong, positive energy his way this holiday season.
Matthew still has his GoFundMe (https://www.gofundme.com/y495r52s) active if anyone would like to contribute to his families on going medical cost needs.
Read the original story HERE.
But this year was a much different story for the Lacey family and Ashlyn’s mother was happy to tell us that she was healthy and able to celebrate her 14th birthday with her annual hayride!
Mom Laura also told us how useful their van has been in transferring Ashlyn to school each day where she enjoys going to science and lab class!
Read the original story HERE.
Read the original story HERE.
Makayla is now in the 9th grade with amazing aspirations of getting her CNA license when she graduates and then going to medical school at Baylor! Makayla still experiences many hard days though, but Bailey has “proven to be a lifesaver” during these tough times. “Bailey is Makayla’s constant in life. She gives Makayla a focus and reason to keep going everyday, especially on the really hard and painful days. Although Bailey's primary purpose is medical alert/support, the emotional and social support she has given Makayla has been an amazing gift.”
Read the original story HERE.
Oakley’s mom Sarah told us how he has endured a few additional more surgical procedures this year, including the creation of another hole in his abdomen upon finding out that his bowels were not working properly. Sarah said that “due to the extent of his care, it was decided that Oakley be schooled at home through a virtual online school in which I help him navigate. It has been an overall positive experience for the both of us.” Oakley is able to make the most of out any situation with his positive attitude and contagious smile of his! Oakley you are a true hero, keep smiling, and KCCO!
Read the original story HERE.
She just endured her 50th surgery in August and was recently started on daily injections to try and help improve the functioning of her lungs. Tammy explained that “they are only functioning at 20%.” Despite all of this, she continues to keep her spirits up and now with the help from her new furry companion! She now has an adorable yorkie that she is able to hold and love on!
Read the original story HERE.
Well Faith has become a little superstar herself and has now met Kelly Clarkson! She even captured this adorable selfie with the celebrity. We don’t know how she does it but she’s rocking it!
Mom Gina said, “I love these celebrities. They hug her, talk to her and don’t see her disabilities!”
Keep shining Faith, just like the star you are!
Read the original story HERE.
Melissa says she's a bit nervous. As she puts it, "I'm not big on giving speeches but I've learned a lot about being an inspiration because of my friends, family and all my fellow Chivers so I think I owe it to everyone else to compete and be the best I can be for everyone that follows me and has supported and loved me all these years."
We have a feeling she'll do just fine.
Melissa wanted to share some more of what is going on in her life recently. We'll let her take it from here:
"I am still working on finishing up my driving and getting hand controls. I have some new news that isn't exciting. I have found out that my shoulders are struggling from propelling my wheelchair. The shoulders are the most important part of the arms when it comes to being independent with your wheelchair. Now I need a piece of equipment called the SmartDrive before my shoulders give out on me completely. I just got out of the hospital for a little over a week but I'm feeling better now. My summer was pretty healthy for the most part and I felt very lucky for that."
"At the end of December, I will be getting a pretty big operation on my spine. I have a lot of pain and spasms daily that keep me on a ton of medications and I can't stand it anymore, as I'm taking over 20 pills a day. So while this surgery is super invasive and scary to me, it will do wonders for my body and my quality of life. I will also be in great hands at Hopkins. I will definitely let you guys all know how everything goes. On a little side note, I appreciate allllll of my Twitter, Facebook and instagram love so much more than you guys will ever know. You don't understand what it does for my psyche, the amount of support and love I receive daily really reminds me that I have a purpose here when for years, I felt that I lost all purpose and couldn't understand why I was even still here. I am so very blessed and thankful for all of y'all. Can't wait to see everyone in two weeks, I can't wait for hugs and pictures and to feel the love that you all possess and give it all right back!!!!”
Read the original story HERE.
"Yes this happened!" Faith's mother, Gina told us. "It was fun and she was a great person. We had a blast with her!"
Read the original story HERE.
Jayden has certainly had some ups and downs since then. Since Jayden's surgery in march he had a little setback however that didn't stop him long. Jayden recently went back to the surgeon where we received great news. Jayden's surgery to straighten his left humerus deformity was successful. Jayden is now able to feed himself a little easier, gained more use of his left arm, and it definitely improved his wrist function which allows him to go back to drawing. Jayden has recently begun walking short distances independently. His mother tells us that his perseverance is what drives his healing. He now tells people "KCCO"!!!
While on a recent trip back from the Cincinnati Children's Hospital for a surgery, Jayden got to meet Bill Murray and his son, Luke. Bill was traveling to Chicago to watch his beloved Cubbies in the NLCS. Bill talked to Jayden and his mother at great length about Jayden's surgeries and the Cubs. He even wished Jayden "good luck" before leaving.
Read the original story HERE.
Evie's van is now in the hands of the Morris family and Evie loves her new wheels! Candice had this to say:
"Evie is really enjoying the van and is so much more comfortable in her wheelchair. I am not a big cryer in front of people, but on the way home Wednesday evening I had tears running down my cheeks. This is a life changer for us. My parents will be able to safely transport her and that gives me such a sense of relief. My father has had multiple surgeries and doesn't feel stable enough to lift her in and out of a car seat and now he doesn't have to worry about it. We are overwhelmed with gratitude. Thank you. Thank you. Thank you!“
Read the original story HERE.
Kellan's mother, Misti, tells us that Kellan is doing really well. She told us that his ketogenic diet has worked wonders, decreasing his number of siezures drastically. It's worked so well that he's been able to ween off one of his seizure medications while working to wean off 3 others. While his development had slowed because of the seizures, lately he is blowing his family away with his advancements. Misti told us that Kellan has been taking steps by himself in his gait trainer again. "His army crawl turned into a bulldoser crawl," Misti said. "His personality has blossomed as well, and let me tell you, Kellan is a funny funny little guy. He is still very much enjoying his therapy room, and he knows that it is his space.”
Read the original story HERE.
Read the original story HERE.
Liam's mother tells us that with his therapies and the gift of independence from Chive Charities purchasing a family minivan, Liam has been making amazing strides forward!
Read the original story HERE.
Remember the old computer at the Special Kids Care in Tulsa?
… the one gathering dust?
Special Kids Care received a very special package from an anonymous Chiver! Miss Jo, the Fairy Godmother, explained:
"Yesterday the office computer finally gave up. I have been seraching Walmart etc for a refurbished tower when UPS delivered a package to us. There is no return address. Inside was the most beautifal all-in-one computer I have ever seen. Especially here. We have no idea where it came from."
And tha'ts not it. Miss Jo continued:
"I just spent the afternoon with an OK Chivette, Rebekah Smith, who is an artist. Rebekah called me and said, hesitantly, "I don't have money to give but I am an artist and would like to do some murals for you." We have been wishing for an artist! We have. She also wants to help us with the sensory room!!!"
....And the Chivers strike again, like knights in shining armor.
Read the original story HERE.
Izzy had a busy summer campign fishing swimming in rivers and lakes and trying to keep appointments to a minimum. According to mom, Heidi, "Izzy just enjoys being a kid. Now that school is started," She continued, "she is back in Girl Scouts. She still loves horseback riding (horse therapy) and swim lessons. We set a goal with her swim teacher to work towards swim team (Eli, Izzy's big brother is on swim team and Izzy wants to be too). We went to this great event with CAST for kids, where fishermen donated their time and boats to take kids with special needs and their families out fishing, which Izzy and her brothers loved."
You go Izzy. We know nothing will stop you.
Read the original story HERE.
Over time, Emberlyn’s legs became a health hazard. Emberlyn’s mother, Joanie, had met older children with Type 4 CRS, whose legs dragged behind them, causing infections or sores, presenting obstacles to their independence and mobility. Amputation surgery was quickly becoming her only option.
Because prosthetics must have a fulcrum, a hinge, something to connect to… it was determined immediately that prosthetics were not an option for Emberlyn. This wasn’t going to be easy.
This is a photo taken hours after Emberlyn’s surgery. Joanie said, “She just wanted to sleep and sleep. I refused to leave her side. Every now and then Emberlyn would wake up and look me in the eye. She was exhausted but not scared. She was determined.”
Six months later, Emberlyn’s older sister, Ellyna, was celebrating her third birthday. She wanted to have lunch at the McDonald’s Playland in their hometown of Lincoln, Nebraska.
Other kids bullied Emberlyn that day. Two boys were pointing and making fun of her, when Ellyna stepped in front of them and said, “That’s my sister.” Ellyna is her sister’s ever-present guardian. The boys continued to point, when Ellyna took a step toward them and stared them down. The boys cowered and ran away.
That night, Ellyna had a princess-themed birthday party. The girls love all the Disney princesses, from Cinderella to Elsa. But Emberlyn’s favorite character is Mickey.
Ellyna decided they should both wear Minnie outfits so her little sister would be happy after a rough afternoon.
Before Ellyna blew out her candles she said, “I wish my sister could see Disney World.” The moment was touching, but it broke Joanie’s heart.
“When I heard my daughter say that, I was so proud of how selfless a three-year-old could be but I never felt more helpless. I knew we couldn’t afford a trip to Disney,” said the single mother of two. “In fact, we had never been on vacation. The only time we left Lincoln was to bring Emberlyn to the hospital in Omaha. I hate to say this but we call those trips ‘vacation’ so Emberlyn would feel better.”
Behind the scenes, Chive Charities was hard at work on an idea. We knew the need – an ADA-accessible van to get them back and forth from Lincoln to the hospital in Omaha. Before we can dream, we must address the reality. So Chive Charities’ Green, Gold, and Silvermembers made a $53,000 grant to purchase the Hemmer family a 2016 wheelchair-accessible Dodge Caravan.
These are the uncelebrated sacrifices that our Chive Charities members make every week. They allow us to clear the runway for something amazing to happen.
It would cost $10,000 to get the family from Nebraska to Disney World so Emberlyn could meet her heroes. But the Chivers thought one night was a silly thing.
As one Chiver commented: “One day at Disney isn’t enough. They have weeklong all-inclusive package too. Maybe we should get Emberlyn that instead of this stupid $10,000 goal John just limped in with. I’ve been saving up to bring my family (to Disney World). But I’m donating all of it to Emberlyn. We can go next year. They’ll understand someday. Let’s go.”
Chive Nation rode in like knights in shining armor. Led by the Central Florida Chivers (Making a strong case for Bona Fide status) we raised $33,000 for Emberlyn and her family to go to Disney World for a whole week!
Welcome Emberlyn to the Magic Kingdom!
The Central Florida Chivers even showed up with presents for Emberlyn!
The CFC told me via email, “I saw this little girl with blue eyes and a precious smile, and I instantly knew it was Emberlyn. The moment Joanie set her down she was off, she’s that independent. We were captivated by Emberlyn’s energy. Her confidence and strength is inspiring.”
Emberlyn loves Rapunzel so her mom told her to go find a shopping cart…
And that’s about the cutest thing you’ll ever see.
The nice people at Disney World found out about Emberyln’s arrival and arranged for her very own Princess Breakfast!
From Snow White to Cinderella, even Elsa! Every princess showed up to meet Emberlyn. Thank you, Disney World!
Joanie told me, “I have never seen Emberlyn so happy. Words will never be able to express the gratitude I feel for the Chive community. Just when I thought I didn’t know how we were going to make it, you showed up. It sounds corny but it was the closest thing to magic I’ve ever witnessed. “
And finally, Emberlyn met Mickey Mouse. Priceless.
Don’t worry, Mickey surprised them the next day at Disney World.
Read the original story HERE.
Alyssa’s family received their special order van this week and they couldn’t be happier! “We picked up the van from Mobility Works Friday evening," says her mother. "It has already made a difference for us! Alyssa and her siblings love it almost as much as my husband and I!! This wouldn't have been possible without Chive Charities. We can't say "thank you", enough!"
Read the original story HERE.
After hundreds of lung surgeries and countless emergency trips to the hospital, David has come down with a severe, and possibly fatal case of bilateral pnumonia. David had recently been told that a bilateral lung transplant may be his only shot at this point. However, due to the debilitated state of his immune system, the risky and by no means sure-shot procedure is not an option.
Ever the motivating presence, David told me he would never throw in the towel. "I'm going to take this punch," David said, "and do everything I can to beat the long odds stacked against me."
David could really use some love. He's currently at Seton Medical Center Austin: 1201 West 38th St, Austin, TX 78705. He's currently in IMC Room 480.
Feel free to reach out to him on his Facebook page HERE
Read the original story HERE.
Read the original story HERE.
“The house is finally started. We are building a 2200 sq ft ranch home with no stairs or steps that is accessible for Audrina. We have had some road blocks along the way that have delayed our project but we have a goal of being in the house by Thanksgiving. I think it will be closer to Christmas however. We broke ground in the spring and literally the next day had a meeting to discuss tax implications on the original plans of 3400 sq ft. After that meeting we scrapped the plans and scaled down to 2200 sq foot design.This set us way back. But we recently put the basement walls in and once the support beams go in we can back fill the soil and grade it out so that it is flat ground again. The framing will start in 3-4 weeks once our contractor is available. There are some nice volunteers helping us and we have had some discounted prices so far but I anticipate we will use the all of the money raised in the flash campaign plus from the sale of our house in order finish the project. This has been a total leap of faith trying to get all this done. Not exactly stress free. I am optimistic it will work out and we will be thrilled with our new home and Audrina will be more comfortable in this house. I will send some pics of the construction and will keep you updated as we get some walls up.”
Read the original story HERE.
"Truthfully, this has been the first year that we've had the sinking feeling she won't make it to next year," Erin explained. "Several surgeries and extended hospital stays, with the biggest of all (hips) next month."
"Lunden's seizures landed her in a coma in March. She was "resting" (in a coma) for 8 days and we able to come home on day 12. Lunden had a VNS device originally placed in October 2015 to help with her seizure management. The last time (July 2016) the data was pulled on the device it showed that the batter was already low and it had fired on more than 5,000 seizures in 29 days. That's 167 seizures a day. Lunden began a ketogenic diet in August 2016 as a last ditch effort to get her seizures under control. It seems to be working already, but Lunden's body is having a hard time managing how to digest the diet effectively."
"Despite it all, Lunden is happy. She's the light of our lives and our greatest joy! Lunden continues brings a smile to everyone's faces with her silliness and giggles. She's truly a happy soul! Chive did an amazing thing for Lunden 2 years ago by purchasing her a van and some medical equipment that insurance didn't provide coverage for. That van has been something we are thankful for everyday!!! Lunden has 3-5 appointments a week and "Pearl" is a workhorse that takes Lunden everywhere she needs to go in style! As for the medical equipment Lunden uses her stander daily and her activity chair to help me bake and cook!"
SIDE NOTE: Lunden LOVES mail. She FLIPS out over her "mail bag" and cherrishes opening it to any mail that comes in! If you would like to send Lunden a sweet card or postcard to show support during this tough time, you can send it to:
Lunden Jensen
PO BOX 182
Olathe, KS 66051
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CTX Ability Sports was recently blessed to have over 180 Volunteers, including Operation Supply Drop and local Chivers, come together to help build a community park right next to KCCO Ability Field! CTX continues to improve upon their amazing special needs baseball field and their latest mission is to finish the cement walkway that connects the nearly finished rubberized/shaded playground and the new ADA restroom. The goal is to complete a full circle around the park so children with wheelchairs can enjoy the whole complex.
If you like to get involved with this new endeavor you can do so by donating here: https://www.gofundme.com/KCCOabilityfield
or you can contact CTX Director John Lorek to get involved: john@ctxabilitysports.com
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“Elizabeth passed away Monday, September 12th," Kathleen told us. "She passed peacefully in her sleep. Until the end, she was vibrant Elizabeth. The weekend before she passed, Elizabeth went on a date with her good friend, they went to dinner and a movie. On Sunday she went to church with her dad. She went to bed Sunday night and never woke. She will be greatly missed, most of all by her dad, Leo.
Leo came in to donate all of Elizabeth's adaptive equipment to our school. I can't look at it without crying. Leo is going to keep Elizabeth's lift van. Elizabeth's older sister has MS, and there are days she has difficulty getting around. Leo knows this gift will still be needed in the future. This is a gift that keeps on giving.
Elizabeth's wake was on 9/16 , she was dressed in the prom dress she wore in May, to her last prom. Leo styled her hair, his final act of love to his very special girl.
Thank you for giving a wonderful family a much needed amazing act of kindness."
-Kathy Moses
Read the original story HERE.
This week, Mick is scheduled for a spinal fusion surgery. The surgery is very dangerous and painful and his family is asking for Chive Nation to send their love. Stay strong Mick, our thoughts are with you!
Read the original story HERE.
Trey's father recently shared great news with us. “I wanted to send you this so you could see it for yourself! It’s been 3 years since he could do this,” he said.
Read the original story HERE.
Work is underway on the second cabin in honor of Justin Fitch. Thanks in part to the generous Chive Nation donors and the local chapters who continue to support Active Heroes through both donations and volunteering. Justin would be proud!
Read the original story HERE.
It is with heavy hearts that we share Tahron's passing on Monday, September 5th, after years of fighting ALD. His mother, Cassandra, told us "I have peace right now and I know his legacy will live on."
You can learn more about ALD, help spread awareness and help Tahron's legacy live on by visiting the ALD Foundation HERE
Read the original story HERE.
On Thursday, September 8, Caroline officially became a kindergartner!
We are thrilled to report, that after some contentious battles with the school districts, Caroline will be attending her community school (for the first time) in the general education kindergarten classroom for no less than 80% of each school day. We are so thankful that Caroline's community school is accepting her with open arms and working hard to make this school year a success for her. Caroline had a blast at the school this week, taking pictures in the classroom photo booth and even kissing her teachers and not wanting to leave.
Caroline is transported to and from school in her awesome purple Chive power chair. In the classroom, she uses a walker and is now taking 3-4 steps independently!
Mother, Sarah wanted to thank the Chive Charities donors and the help they have provided. "Thank you, Chive, for being the catalyst behind all the wonderful and amazing things that have happened for Caroline and our family in the last two years. We are grateful every day for the support and encouragement of Chive Charities.” Before Chive," Sarah continued, "we were lost. We didn't know how to help our sweet girl through her sensory meltdowns. We often felt trapped in our home. Before Chive, I didn't realize what a strong advocate I could be for our daughter. We settled for what we were offered by the school districts and therapists because we didn't know better. Your gift gave me the courage and confidence to proceed forward, breaking down walls and barriers to Caroline's success and happiness."
Read the original story HERE.
Now entering kindergarten, Poppy's parents are fighting to get her into the same school as her older sister, Ainsley. The two sisters have always shared a special bond and attending the same school would assure that Poppy is not left behind. Her father Tom explains, "Our goal is that, even though she has a disability, she will never be excluded or not given the opportunities of any other kid her age. Even though she doesn't speak, other kids are drawn to her and it just fills my heart with joy to see that she interacts and communicate just fine with kids her age. That makes me think it's the adults that really have challenges to overcome related to her disability."
"She continues to use the equipment that Chive Charities provided on a daily basis. Her iPad is always nearby and her safety bed is her own special space."
Read the original story HERE.
Her fight against Transverse Myelitis didn't stop her from accomplishing her long sought-after goal. "I had my second attempt at my behind-the-wheel test," Brittany told us. "I PASSED!!! I am now a fully licensed driver! I've gotten so many congrats from the Chive members that I've come to know and they've been amazing support. No one can completely comprehend what this whole new chapter of my life means. I've been working towards this goal for over 15 years. I cried at DMV when they handed me my temporary license because I couldn't believe I finally did it. Now, in the next couple months, I'll be trying to enjoy this new independence and then I plan to begin job hunting. Time to my life to be as normal as everyone else's and truly begin #Adulting."
Thank you again so much to The Chive - not just the charity, but the community as a whole. No words can even begin to explain how free and just... normal I feel because of the help and support I've gotten from The Chive.”
Read the original story HERE.
Rylan recently started kindergarten! This is huge for this determined girl with Rett syndrome, a rare genetic neurological disorder that makes communication difficult. Her mother told us that she LOVES her teacher and teacher's aide!
Read the original story HERE.
Luke's mother, Cheryl, let us know that Luke's bed was recently delivered. "It is so much easier getting him dressed and changed," Cheryl told us. "As you can tell, Luke loves it as well! Thank you again."
Read the original story HERE.
In early 2016, she recovered from a 4-day hospital pneumonia bout only to get regular respiratory infections for weeks. After an orthopedic doctor ordered x-rays on her spine, it was determined that Chloe's scoliosis was so severe that was compromising her left lung. To fix the problem, a 6-hour spinal fusion surgery was needed, during which Chloe lost a lot of blood. After surgery, Chloe's left lung kept collapsing and her new normal included a bipap machine, oxygen, contentious g-tube feedings, cpt machine, suction machine and hourly pulse o2 readings.
However, things started to turn around for Chloe. According to her mother, Julie, "Chloe is no longer on supplemental oxygen or the bipap machine and no more hourly pulse o2 readings. Both of her lungs sound beautiful! She is doing great with her therapies and she smiles and laughs every day. She is truly amazing."
I would like to thank all of your donors again for the van they gave Chloe. It has made her so comfortable when she has to go to doctor's appointment or visit family. The day she was released from the hospital her dad and I were so nervous bringing her home. She had so much equipment that I might have had to adjust are use on her on our 1 hr drive home. The van made the situation so much easier. She was able to ride in her wheelchair directly behind me. Chive Charities has been a real blessing to our family. Thank you!”
Read the original story HERE.
The boys were hard at work in August raising awareness for SMA! Their mother Sierra continues to be an advocate for research and they inspire us all with their mission to teach as many people as they can about SMA. To learn more head to www.CureSMA.org for more information!
Read the original story HERE.
After nearly 2 years of planning, building and construction delays, Michael's living space is now complete. “I'm excited about it being completed," says Michael. "I am planning to have everyone who helped make this miracle a reality over for a completion party! Thank you so much to everyone who is helping make this all come together! God bless you and thank you”
Special Thanks to everyone who helped make this dream a reality, including:
1. Bel-Air Construction (Completing this project at reduced labor rate)
2. Blue & Green Inc (Stephen Czar, Preparing initial drawings free of charge so the project could be approved by the board, as well as completing all following drawings at a reduced rate)
3. Danny Sosa (Lumber donation in lieu of his annual bonus)
4. Chive Nation (Gofundme Donations)
5. Chive on California (2 T-Shirt donations & Fundraising event @ Harrah's)
6. ACIDIC
Read the original story HERE.
Emberlyn recently celebrated her 2nd birthday with a Little Mermaid theme, Under the Sea themed party. She and her family cannot wait for their Disney trip this September, made possible by Chive Nation. They have brunch reservations with the princesses and lunch with Chef Mickey lined up, and so much more!
Read the original story HERE.
Charley’s bathroom renovation is complete. He wasn’t able to be there for the reveal but we hope wherever charley is he can rest easier knowing his family was taken care of even after he passed
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Isabelle had an amazing time attending a camp in Oregon called Camp Attitude. It is a family camp for families with kids with disabilities. Izzy's mom, Heidi recounted the experience. "Our family had the best week and they work so hard to make it so that every camper can participate in anything. We hardly ever go places where there isn't something that Izzy can't participate in - here, they made it so that even campers in wheelchairs can participate in everything. All the kids got a "Buddy", a volunteer who was with them all week long, playing with them, taking them to activities so that the parents can go to the many parent activities (which were basically support groups for parents. It was the best therapy ever."
"And the kids are so loved and treated like superstars all week. It was amazing to be somewhere where you see a kid in a wheelchair, or you see someone with Autism having a meltdown, and no one gives it a second glance. It's just no big deal. It was a huge blessing for Eli too, who constantly is on guard, ready to defend Izzy from anyone who says mean things or treats her badly. He could just be a kid and didn't have to worry because everyone there got it and understood and kids with special needs were just loved for who they are, rather than looked down upon for their differences."
Read the original story HERE.
Griffin got a new gait trainer. Look at him go! He also got a new modified bike that allows him to ride along with Logan and Kaylee. On the medical side, Griffin's new ENT is finally fixing an ear drainage issue he has had for months. Krissy and Heston say they are looking forward to attending the Green Gala this year as well!
Read the original story HERE.
Dawnavyn had a couple surgeries lately. "I had the gastric sleeve back in February hoping that losing weight would help me," says Dawnavyn. "I have lost a little over 40 pounds since then however I just had to have surgery again for another shunt revision on the 13th due to it being clogged. I am now in recovery again from that surgery now and my seizures since surgery have increased so I am now in contact again with my neurologist”
If you wish to support Dawnayvn during her recovery, you can do so right HERE.
Read the original story HERE.
Big Poppa Chive surprised another one of our sweet grant recipients with a special Chive Charities themed bear. Shelby clearly loves hers!
Read the original story HERE.
Matthews grab bars are installed in his new shower and he’s busy enjoying some pool time!
Read the original story HERE.
Zoe Recently underwent the biggest surgery she'll every have. They removed two vertebrae in her neck (c3 and c4) and will to fuse it on the 27th. The initial surgery went well, with Zoe able to move all extremities shortly after waking up.
According to her family, "right now, Zoe's doing well with halo traction, doing PT every day and getting up and practice standing and walking. Our goal is 10 pounds of traction by July 27th and right now we are at 9 pounds. The traction is straightening out the spine as much as possible before the spinal fusion on the 27th. The weight from traction is helping her spinal cord a ton which is what is giving her a bit more strength and why we're getting such great results standing. The doctor mentioned next year after she's healed from surgery that we will be able to focus on getting her upright and hopefully able to walk!"
Read the original story HERE.
Gianna has a lot going on these days. Her family applied for a handicapped accessible house through Habitat for Humanity and were approved! According to mom, Jaime, the home "is so necessary and will be so helpful. We are so excited for it. Yay!!!" More updates to come regarding the home.
In addition, Gianna has grown so much in 7 months that she requires another hip surgery to lengthen the screws that connect to her growth plate. However, Gianna has been doing well. She's been learning so much and having fun trying to talk.
Read the original story HERE.
Nicole and her family recently moved to Arizona and let us know that the move has done wonders for health and development. Mother, Kristina, told us,
"It hasn't been easy but the freedom we've been given is amazing. Nicole is thriving and doing better than we ever expected. She gets to be outside where she can play with her sibling. Her speech has improved as well as her mobility. We had no idea just how good this move was for her. Nicole's on the fast track right now to have her tracheotomy removed and begin the process of starting school this year.
Most importantly Nicole who was given a death sentence before birth by doctors, just turned 3 and is thriving and proving them all wrong. Nicole is so much stronger than I am and is our motivation for everything. “
Read the original story HERE.
"Lucy and I are back in Denver to see doctors. Although we are not admitted to the hospital, we have been here since Saturday. Abnormal results from her studies and difficulties have called for a trip up here.
We are looking to avoid another surgery with alternative options to help little Lucy with her bladder and bowel control. She is currently having bladder spasms on a daily basis.
They have discovered a mass in her bladder. This may be the cause of the leakage, but we don't know for sure. We are meeting with the specialist tomorrow morning. Lucy is taking it well, but was very emotional the last few days. Getting her nails done and losing a tooth seemed to help. Wish us luck."
Read the original story HERE.
Mareiki Yocum of Active Heroes reached out to us:
“I just wanted to let you know that cabin 2 is under construction! It's still early in the process but I can't wait to see the progress! Also as we come up on the 1 year anniversary of that amazing flash campaign, I wanted to send a huge thank you to you guys again! Words can not describe how thankful I am that just was able to see this happening sadly just a few months before Major Justin Fitch's passing! We miss him everyday but I know he is very happy up in heaven looking down!”
Read the original story HERE.
Big Poppa Chive (Brad Zahn) has struck again. The latest surprise he delivered was to Cattaleya, who suffers from a rare diagnosis called EB. Although her days are filled with pain, Big Poppa Chive gave her reason to smile.
Read the original story HERE.
Mom told us, “Jocelyn is loving riding to the park and we went to a family reunion with her last week and were able to take her chair so she was able to visit with her cousins. She loved it so much, that she fell asleep on the way home.” KCCO, Jocelyn!
Watch a video of Jocelyn walking RIGHT HERE!
Read the original story HERE.
Matthew’s family has moved into their new wheelchair-accessible home! The future is very bright for this young fighter... his new home will give him more independence and safety as well as convenience for his family.
The transition was made even easier with the new wheelchair ramp the Chivers purchased and the new safety bars installed in his shower. You can follow Matthew’s journey RIGHT HERE.
Read the original story HERE.
Tasha-Kay reached out to us with some very exciting news! “These last few weeks the flash campaign funds from November have really manifest in our lives! Lucy's new chair came in. It is the appropriate size for her body, and doesn't hurt her feet. She is also tall enough to be able to sit at the table with us when we go places. It doesn't fit in our car without disassembling it every time, but we happily do so for her comfort. Her new braces should be here this week, and her orthotics designer said she is doing so well we are going to try a smaller AFO.
We have also closed on a house we can call home. The house is being made accessible for her with minimal modification! We are having to put in some ramps and bars, but some were already in place. The house Chivers helps purchase also has a swimming pool to accommodate her therapy needs! It is close the the cycling path so we are very excited to keep using her hand cycle on a regular basis.
Lastly, with the funds she has been able to attend OT and has been approved to begin interviewing for her mobility dog! Assistance Dogs of the West said they will be vi ya ting us Monday for schedule dog interviews. It is still a long process but it's the next step.
This next two does come at a great time for our family, as we are grieving the loss of our sr. Family Dog Linus.
Also this summer Lucy again donated her hair, this time to 'wigs for kids'!”
Read the original story HERE.
"He has overcome huge odds with his 1 year birthday! Thank you all very much!" KCCO Merrick, Chive Charities has been proud to have been behind you every step of the way.
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"Well I know I have been a little absent as of late, things have been busy heading into the summer. Good news is I finally got my college diploma and things are moving forward with the transplant stuff. Pretty excited and looking forward to the future!"
We're behind you every step of the way, David. KCCO!
Read the original story HERE.
The tests showed that Aubree has a single mutation on the gene GMPPN and a mutation on the gene SCN9A, but they don't have any other information than that. The diagnosis the family was hoping the results would show, is sadly inconclusive.
In other news, Aubree has recently started to work with the lighthouse for the bling and the school for the mobility and vision! KCCO, Aubree!
Read the original story HERE.
"Tia was able to go on her long-anticipated road trip to visit grandma! Thank you to the generous donations of Chive Charities members who purchased her wheelchair-accessible van!
Read the original story HERE.
Read the original story HERE.
The 3rd Annual Firefighters Ball is being put on by the Colbert Project this year, which was started by our very own Devon Colbert! Check out his amazing non-profit RIGHT HERE.
Read the original story HERE.
Read the original story HERE.
He is graduating 8th grade and ready to visit the high school he will be attending!
Jacob "never complains, loves his iPad, loves his bike... and all of us love the shower. It was a huge help. Not to mention all the diapers and wipes we were able to receive. Thank you, thank you again."
Read the original story HERE.
Kathy, the school nurse who filled out Elizabeth's application for her after the sudden loss of her mother said "she looked radiant in a pink dress her father made." Elizabeth even made the front page of the local newspaper! You can read the story here.
In a few months Elizabeth will be transitioning to adult services, which means she is GRADUATING! This news is bittersweet for Kathy and the rest of the nursing team, Elizabeth has been with them since she was just three years old. She will graduate on June 16th, her 21st birthday.
But Kathy has no fear for her future: "Elizabeth is a warrior, she is a fighter, she is strong willed, and has a great sense of humor. She is just like her dad. They both love their new van and Leo is able to transport Elizabeth safely to the hospital, her numerous doctor's appointments and to school every day. Every time Leo pulls to school in his new van, I smile. The past year has been very difficult for Elizabeth's family, and not having to worry about transportation has been a gift like no other. Thank you for the wonderful work you do, you have made a huge difference in their lives."
KCCO, Kathy, Elizabeth, and Leo!
Read the original story HERE.
This May, two of our favorite girls, Melissa and Abigail, reunited thanks to the kindness of Brad a.k.a. Big Poppa Chive who took them out for a ride of a lifetime!
Read the original story HERE.
We cannot ever repay our debt to you Charley for your service to our country, but we can honor your memory by continuing to pay it forward with selflessness, bravery, and grace. Rest in peace.
Read the original story HERE.
Jayden's mom Shellie recently reached out to us with some disheartening news. "We learned that Jayden is not healing as fast as they expected and must continue with his post surgical restrictions. He is pretty bummed about this because it means he is unable to walk in his walker and must stay confined to his chair. Jayden is not the child that can be held back as we all know."
So in typical Jayden fashion, he is finding new ways to seek fun and adventure for the next 6-8 weeks. He's still all smiles. KCCO, Jayden!
Read the original story HERE.
KCCO, Christopher! We're behind you all the way. Enjoy your beautiful new smile!
Read the original story HERE.
Recently the Robotics Team from Park School partnered with PACT to build "Go Baby Go," a specially adapted motorized fleet of cars for PACT kids. The high school students are currently working with physical therapists on staff to develop and adapt two kiddie cars to meet the individual needs of two children in the medical day care.
In other news, the Kennedy Krieger Institute's Annual ROAR For Kids event - a family run to support kids, research, and programs at the Kennedy Krieger Institute - was held in April 2016. Several PACT students and former Chivers, Xavier and Elizabeth, joined in the fun! KCCO, PACT!
Read the original story HERE.
The Executive Director of H.E.R.O.E.S. Care, Jon Jerome, continues to tell us about one young military spouse who, through her tears, apologized for having to ask for help. She told them that for the last two days, all she had for her three children to eat was a single box of macaroni and cheese and a hotdog... which she cut in thirds for them to share.
"That's why," Jerome began, "H.E.R.O.E.S. Care established a network of food pantries across the state open exclusively to military, members, Veterans and their families. Last year alone, more than 4,000 of these families received over 120 TONS of non-perishable foods through this life-saving program.
And now for the best part: Thanks to our relationship with area foodbanks, we are able to purchase food at an average of 10 cents per pound. A gift of only $10 provides 100 POUNDS of food for a family struggling to make ends meet as a result of the complex effects of service and both the seen and unseen wounds of war.
You have a chance to be a part of great goodness. They have given so much. Here's your chance to give a little something back. We promise to make your money work hard. Over 97 cents of every dollar we receive in donations is returned to military families in direct program services.
The need is great. The time is now. Thank you for your help."
Read the original story HERE.
PFC took him "shopping" to replace items that were lost in the fire. They gave $500 to his family. They continued monthly financial support to cover the health insurance of Widow of Granite Mountain hotshots until the benefits situation gets sorted out. They made donations to the firefighter Angel foundation, as well as to the Salvation Army's Kid to Camp program.
To stay updated on how Prescott Firefighters Charity is paying it forward, follow them on Facebook HERE.
Read the original story HERE.
"Thank you guys again," Liam's mom Cheryl told us. "Sending our love and thanks to all of you for changing our life!"
KCCO, Liam and family!
Read the original story HERE.
Towards the end of 2015, Eloy became very sick. He had paralytic ileus (obstruction of the intestine due to the paralysis of the instestinal muscles.) In two weeks, he lost 11 pounds. After only returning home for one week, he was back in the hospital having surgery on his feet. He did not go back to school until the middle of March... almost 6 months later.
In some ways, Eloy has regressed. He now vomits regularly and cannot be left alone for extended periods of time for fear he will choke and asphysxiate. This, mom tells us, "is what she was scared of when he was a baby."
But in other ways, Eloy is perservering. He is a "happy child most of the time."
Read the original story HERE.
Beginning in January, we added a new branch to our peer support program called Firehouse Kitchen Talk. FKT is a monthly dinner prepared for firefighters, by firefighters. Taking place on the last Tuesday of every month at FoF’s decommissioned firehouse in Red Hook, Brooklyn, Firehouse Kitchen Talk allows firefighters to speak candidly with their peers about various aspects of the job, from forcible entry techniques to preparing for retirement. Each talk features a presentation by a member of the FDNY community, which will lead to a forum in which all attendees are welcomed to participate, or just listen. Attached are photos of the inaugural FKT in January.
We have also had some great exposure in the past few months. Nancy Carbone, FoF's Executive Director, was featured in an Oprah Magazine article highlighting female leaders of nonprofit organizations (see below.) Due in no small part to Chive Charities and its generous donors, Friends of Firefighters has enjoyed a phenomenal period of expansion and looks forward to even more growth and continued partnership with the Chive.”
Read the original story HERE.
Read the original story HERE.
Over the next 10 years, the foundation will sponsor 1,000 combat veterans to Vietnam under this educational initiative. It's aim is to raise awareness to the selfless courage of all Vietnam War vets, so future generations will never forget their sacrifices or those who were left behind.
“Friends,
Words can't describe our first day here in Vietnam. I'll try to place this experience into perspective for you all and help you understand the purpose and mission of the Greatest Generations Foundation new initiative "The War Without Heroes" to serve our Vietnam veterans.
I asked returning American Hero Mr. Steve Hopper, Combat Veteran of Charlie Company, Third Platoon, Ninth Infantry Division to put this first day into perspective in his own words:
"Timothy, God has been good to me as he stood by me 49 years ago and I feel him with me on this program. I am excited and scared at the same or maybe "insane" time. I now have a front row seat to an opportunity to confront the past, say many prayers and reflect on and remember all those fellow brothers we lost during the offensive in 67 and 68.
As we visit the sacred ground of actual battlefields, I thought I would find it hard to heal these deep wounds I have been carrying on my shoulders for five decades. I know I will never have this opportunity again and I pray to make the most if it to honor my brothers that made the ultimate sacrifice. I owe it to my brothers who were the absolute best to serve beside 49 short years ago. And, they are still the absolute best today."
~ Steven Hopper, Vietnam Veteran
To learn more about the War Without Heroes educational initiative, contact TGGF here.
Read the original story HERE.
“So, I wanted to start off by saying thank you to all of the prayers, positive thoughts, and beautiful this everyone has had to say. Also thank you to our family and friends that have been here for us, there are too many to list them all, but you all know who you are and are loved.
This coming Saturday at 1:00 at Westwinds church in Jackson Michigan we will be having a memorial celebration for our Superhero Zacky! Following that we will be having lunch at Paragon Elementary right behind the church where the kids attend school.
Superhero attire is encouraged as Zacky would not have it any other way.
We also know that a lot of people tend to send flowers to memorials, but we would love, and we know Zacky would also, if you could choose to donate what you planned on spending on flowers to one of these charities so in Zacky's name he can continue to make a difference:
Miracle League of Michigan(Zacky's baseball league)
Superhero Training Academy
Chive Charities
Relay for Life team Dream Believers
Just as we have done from the beginning, we would like to celebrate the graduation of Zacky from this world and to continue to share the Story of our superhero and continue to pay it forward and make a difference.
#TeamZacky is not just a phrase, but something that will continue forever making a difference of people's lives. Just because he is not physically here anymore does not mean that his legacy stops here. Make sure that you tell the ones you love how much they mean to you and to give your children that extra long hug. Don't take life for granted, make every moment count, and lastly don't put off doing something that could make a difference, you never know who's life you could change just by showing them a little random act of kindness!”
You will forever be in our hearts, Zacky. Thank you for granting us all with your presence, your light will never burn out.
Read the original story HERE.
Her dog training is slowly progressing. She is currently participating in OT and has no tyet been recommended to start interviewing dogs to look for partnerships. By summer, Tasha-Kay hopes she'll be able to start meeting dogs. The family has paid the remainder of their lease and is begun the phase of looking to purchase a house!!!! This is very exciting news, thank you to all the Chivers' donations that made this dream a possibility.
"Lucy has been able to receive the medical care she needs to stay healthy, the doctors said she is doing so well they do not need to see her until June! We have also connected with another Chiver in FL who has a daughter with the same condition, just less severe. His daughter, Maddy, and Lucy have begun sending cards to each other like pen pals.
I cannot tell you how much of a blessing Chivers have been!"
We cannot tell YOU how much of a blessing you have been to us, Lucy. Thank you for inspiring us all.
Read the original story HERE.
Gianna celebrated her 5th birthday, and from the looks of it, it's going to be her best year yet. "Gianna is doing so well! She had an amazing birthday!"
KCCO and stay pretty in pink, Gianna!
Read the original story HERE.
It makes us so happy to see Kelly's dreams come true with adventures like these!
Read the original story HERE.
As is apparent in Trey's story, he is arguably the biggest John Cena fan of all time. Over the weekend, Trey's longtime dream became a reality -- and he met his idol.
Words can't express how excited we are for you, Trey! KCCO, Trey & John Cena!
Read the original story HERE.
Once again, he has surprised doctors who said it may be "impossible" or "highly unlikely" that the surgery would be a success. He has been such a trooper, and has surrounded himself by reminders of what true strength looks like. KCCO, Jayden!
Read the original story HERE.
Read the original story HERE.
It's been a while since we've heard about how Bryce is doing, and the reason for that is simple: he's been really busy! Mom Kelly reached out to us recently, “We are now in talks with Bryce's developmental pediatrician, and he wants us to meet with a neurologist before we can discuss kindergarten placement, but he is very pleased that Bryce is in a mainstream class (normal kids) with his aide and learning very well. His sleeping is still a huge problem for us, lately he is so jittery, but loves his weighted blanket to calm his legs. His speech lately has been amazing, he can now write his own name!! He continues with daily and weekly therapy which will continue for quite some time due to regression issues coming along the way. I still can't believe he will be somehow starting kindergarten even with everything he has been through that he can still do that! Unfortunately we are missing the conference this year, but hopefully I can have a few of the PMS moms and dads give me updates, as I hear transitioning into full time schooling is difficult for our children.
We are impatiently awaiting all this snow to melt and the mud to dry so we can set up the pool that a MN Chiver so generously said we could have as long as I picked it up, which I did in the pouring rain, I told him had he had a surveillance camera watching me load that up on my own would have made his year! But we know water is a big therapy pleasure for Bryce, and I am determined to do what’s best for him and give him the best outcome possible. Recently on a regular trip to Rochester for one of his many appointments, Bryce got to stand with an Ice sculpture of the HULK!! We love you all, hopefully we can save for MWM 2.0 tickets, and see you guys like last year in Iowa!! One day at a time, live life to the fullest!!!”
Read the original story HERE.
When Danielle, La'Niya and the rest of the family came home after their whirlwind trip at SeaWorld, they wanted to thank us for making it possible with the van: “SeaWorld Was Fun! We went through the Make A Wish Foundation already & I tell you she enjoyed every moment... Again none of this would be possible without the van so we are very Thankful for Chives Charities!”
Read the original story HERE.
Read the original story HERE.
He endured the pain with his usual positive attitude and was a trooper through it all. Although his mobility is limited, he didn't miss a beat and started playing with friends and his siblings again right away! KCCO, Colton!
Read the original story HERE.
We recently received this update from the Alisa Ann Ruch Burn Foundation:
“The Alisa Ann Ruch Burn Foundation is doing phenomenally well! Last year (2015), we celebrated the 30th Anniversary of Champ Camp, the nation's largest and longest running summer camp for burn injured children. The 30thAnnual Champ Camp was held June 6th-June 13th at Wonder Valley Ranch in Central California. In recognition of this milestone year, commendations from President Barack Obama and California Governor Jerry Brown were made. The Fresno County Board of Supervisors declared June 6-13, 2015 as Champ Camp Week in the County of Fresno. More than 130 burn injured children from all over California and beyond traveled to the Alisa Ann Ruch Burn Foundation’s 30th Annual Champ Camp; a free, safe and fun summer camp environment for children ages 5 to 16 facing one of life’s toughest and most painful challenges: severe burn injuries. More than 2,000 children have been through the program since its inception in 1986, with no cost to them thanks to our generous supporters."
They also are celebrating their 45th Anniversary this year! Since 1971, the AARBF has been fulfilling its mission of enhancing the quality of life for burn survivors and promoting burn prevention. Happy Anniversary and KCCO!
Read the original story HERE.
I've been driving around my area and my dad is driving with me to prepare for my DMV test. Unfortunately, on my birthday (January 27th), I went to the ER due to sepsis and other infections. I had to stay in the hospital for some time and just 3 weeks ago, I had to have open surgery to get some bladder stones taken out and since then I've been recovering and unable to drive. BUT, it will not be too much longer until I am good to drive again!
Despite just having surgery 10 days prior, I made it out to Chive on Bay Area's Chive at the Tank 2 in San Jose. It was my very first time ever seeing a hockey game, and it had been awhile since I last saw the COBA admins and the other Chivers I've come to know. I got some free swag and was amazed at how they opened their arms to accept me and were so happy to see me. It will forever be a memory to remember for life. Admins Charlie and Cyrus took some photos they could maybe give you if you wanted. I can't wait until I have my license and I can drive Dane (the name of my car, who everyone asks about lol) to a meetup so they can meet him finally.
Again, thanks for everything and getting me involved in The Chive, its made such a difference in my life. Tell John I loved his video showing the Chive Austin HQ. This simple idea he and his brother created has gone on to dramatically change lives, like mine in which I thought society is unaccepting of people in my situation.”
Read the original story HERE.
The boy's mom, Sierra, told us it had been too long since she had last updated us on the Kulas brothers' progress. We couldn't agree more. So here's what they've been up to:
Kalen had his first tooth filling at the dentist's office, and Kayen has been fighting off a respiratory infection. Both these problems have kept Sierra and the boys constantly en route. "Having the van," Sierra told us, "has made everything that much easier. Whether it is for our long trips to NY or an hour to the dentist, the boys can relax and recline in their power chairs, comfortably and safely which we L <3 V E!
Thanks so much to all the giving people who made our dream possible through Chive Charities! Nothing would be possible without your kindness and generosity. Again, a huge thanks from the bottom of our hearts!"
Well, Kulas family, nothing brings us greater joy than to know your lives have been made easier because of our grant. That's why we're in the business of making the world 10% happier.
Read the original story HERE.
We are devastated to share that Tommy has lost his courageous battle with stage 4 glioblastoma brain cancer, one day after his 36th birthday. Although our hearts are broken, we cannot help but feel a deep sense of honor for having known Tommy at all. His family shared the following on his Tommy Strong Facebook page:
"Although we are deeply saddened by his passing, we are all grateful to have been witness to the wonderfully full and meaninful life he lived, and are so relieved to know that his suffering has ended. Tommy did not "lose" his battle with cancer, and cancer did not "win." In a way, the story was already written, but throughout this odyssey, Tommy did what he does best and fought to make the best of a situation where the odds were stacked against him. We are so incredibly proud of him and will always remember his smile, kindness, sense of humor, and relentless perserverence that helped get him through."
KCCO and rest in peace, Tommy.
Read the original story HERE.
Ever since Caroline has been regularly attending equine therapy since Chive Charities purchased it for her last year, her core strength has been building every day. It's so exciting to see her reach this major milestone! We're so happy to have been a small part of your success, Caroline! KCCO!
Watch her first steps HERE.
Read the original story HERE.
David went in for his 245th bronchoscopy and there were complications while he was coming out of anesthesia. He went into respiratory failure and woke up in the ICU. He was there for two days, on life support.
He has fought back and is currently on antibiotics to fight off infection. He is now watching Netflix and doing homework and is nearly back to his old self, but it was a close call! Luckily, David's a fighter. KCCO.
Read the original story HERE.
They have battled the awful winter weather, and look forward to this cabin being open to military families when the weather gets warmer this Spring!
Read the original story HERE.
Alex's mom reached out to us recently to let us know that he is loving his adaptive bike! "We can't wait for Spring so we can take him for a ride outside. During physical therapy, the therapist has been putting him in a gait trainer and he is starting to walk some. When he is moving around in the gait trainer... he's all smiles. The van has made getting around to school and therapies so much easier.
We cannot thank you enough for all that has been given to us!"
You are more than welcome, Christy. Our goal is to make Alex's life 10% happier!
Read the original story HERE.
She tells us, "Nala is a snuggler. I took her to the VA last week and she's incredibly in tune with me. She knows when I'm in pain and seems to truly sense my emotions. It is almost indescribable how much better my quality of life is with her by my side!"
Read the original story HERE.
Things like sitting up unassisted, putting on pants/socks/shoes, requires extra help. The pain from the spinal taps means she can only move her back in specific way. She was feeling very down... when she received a special RAK from "Big Poppa Chive". She told us, "It definitely made being bed-bound not so bad." KCCO Pearl!
Read the original story HERE.
She has had no recent health problems. No seizures (!) and only minimal colds. "Thank you for the constant positivity and prayers," Jaime tells us. "You are all amazing! You have made our life so much easier and simpler! Thank you for that."
KCCO, Gianna!
Read the original story HERE.
Bailey has been a HUGE help in her recovery. "The gift of Bailey from Chive Charities has been more than the gift of a much-needed medical service dog. Bailey has given Makayla a sense of purpose - a reason to live - because she knows Bailey depends on her just as much as she depends on Bailey. The gift is... priceless."
Read the original story HERE.
Read the original story HERE.
On Friday, February 12th, La'Niya turns 13! She is officially a teenager, but luckily, mom Danielle says, "doesn't have any teenager characteristics!"
This sweet girl has been able to be out and about a lot recently, thanks to her new van from Chive Charities members. She is enjoying her independence, and we can't wait to hear about the experiences she has now that she's a teenager!
"We are very thankful to have her still here with us," Danielle says. "Thank you, so much. You guys really changed our lives." KCCO, La'Niya and family! And happy 13th birthday from the whole community!
Read the original story HERE.
Defending Bubba's rights is what Chive Charities is all about. Rooting for the underdog. Championing the orphaned causes. We're behind you, Bubba.
Donate towards Bubba's crucial ABA therapy HERE.
Read the original story HERE.
Mom Lisa wanted to catch us up on what Madilyn has been up to lately... and she's been busy! Here she's pictured at her last competition of the season, but she's been going to cheerleading practice regularly and it's improving her mobility, core strength, and flexibility. KCCO, Madi!!!!
Read the original story HERE.
Read the original story HERE.
Leave No Veteran Behind is beyond excited to announce the launch of the Executive Leadership Program - Chicago. The program is designed to assist veterans of any rank obtain mid- and entry- level management positions where their unique skill sets will assist them in their upward mobility, and bring value to an organization's growth.
The initial part of the program will begin on Febrary 22. Then, the Leave No Veteran Behind staff will continue to work with participants over the next six months.
KCCO and great work!
Read the original story HERE.
Alexa was hospitalized earlier this year after she suffered a bout of pneumonia, but luckily she was out in under 2 days! The chair purchased for her by the generous donors of Chive Charities has been great for her development! "Her lungs have been so much better," mom Ashleigh tells us.
Alexa continues to be a great sister to her siblings, Hudson and Haily, and she makes us smile every day. "Just wanted to touch base and say thanks a million!"
KCCO, Alexa!
Read the original story HERE.
Hanna got to enjoy her FIRST Daddy Daughter dance with her date (dad Gary) this past weekend! She danced all night in her chair with her daddy and her big sister Bella. She also went for ice cream after the dance.
"None of this would have been possible without Chive Charities donation for our ADA van. Thank you so much!"
Read the original story HERE.
"We were able to sit comfortably and pack without feeling crowded. We were able to make 'pit stops' without having to unpack the entire car." In the near future, it looks like surgery may be an option to alleviate some of Jayden's pain.
Jayden has also made significant improvements and can now walk short distances without a walker! He can stand unassisted and even hold a toy with both hands. Says mom, "this is a HUGE gain for him!" Go Jayden!
Read the original story HERE.
It is with heavy, heavy, hearts that we share that Alex has passed away. He fought bravely against ALD for years and now we hope this young man may rest peacefully. Our thoughts and prayers are with the family during this difficult time.
We are so grateful we were able to share a part of your life, Alex. Your light will be remembered forever.
Read the original story HERE.
A recent independent evaluation of the Seedling Program showed that 74% of mentors return to continue their mentoring relationship. This retention rate far exceeds the national average for most Mentoring Programs across the nation. Last year, with the help of the $25,000 grant from Chive Charities, Seedling helped over 600 families. They were able to match over 188 new students with their mentors, who will likely be with them until their graduation day.
"But our work is not done," says Jennifer Oseng, Director of Development for Seedling. "We have almost 100 additional children waiting to be matched with a Seedling mentor."
Read the original story HERE.
Recently, Maryland Chivers decided they'd turn their New Year's Eve party into an event that brought relief into one of the most recent additions to the Chive Charities family: Abigail. They threw her a night of charity, laughs, fun, and memories, and raised $8,007 for Abi and her mom!
To Abi, Lisa, Maryland Chivers, and Chive Nation, we have just one thing to say to you: Chive On.
Read the original story HERE.
Read the original story HERE.
We recently received a Camp Casey calendar in the mail from Molly, the founder, attached to a letter:
"We are excited to announce that our first ever Horsey House Call satellite program will be up and running in West Michigan by June! We’re confident that this expansion is the start to paving the way for Horsey House call satellite programs everywhere!
Thank you for believing in the healing power of horses and for helping our small organization grow. We hope the year ahead is as good to you as you’ve been to us this past year."
KCCO, Camp Casey!
Read the original story HERE.
Now that Shelby's goal of finding a safe and reliable van has been reached thanks to the Chive Fund donors, she and her family are focusing on finding a wheelchair-accessible home for Shelby. Their current 2-bedroom apartment has been okay, but it greatly limits Shelby's potential. Between Shelby's medical supplies piling up and her wheelchair equipment, the girls are quickly running out of space. "This has always been our main goal - to provide her with a wheelchair-accessible home that will give her the space she needs."
Read the original story HERE.
"We are starting the 1st International Patient Registry, 1st ATS multidisciplinary clinic in the world, and were involved in several ground-breaking research projects... all in the past 6 months! Thank you Chive Charities!"
We could not be happier to support a charity that, like us, fights for the underdog.
Read the original story HERE.
It has also started restricting his breathing, so he is on oxygen full time. They have put him on the only other chemo that might help him, but now Jaiden and his family are forced to look for possibilities outside the U.S.
They will film their 3rd TV news interview to raise awareness for Jaiden's rare condition to try and find help or raise money to get him wherever he needs to go. Doctors just don't know what to do, they're at a total loss. This is Jaiden's last chance.
Natalie, Jaiden's mom told us that over the summer they spend at the Children's Hospital, four words kept her going: Keep Calm & Chive On. KCCO. After a while, she even had the doctors and nurses chanting KCCO with her! If you want to help Jaiden find a cure or a treatment, you can donate HERE.
Read the original story HERE.
Read the original story HERE.
But there is nothing stronger than Faith, and she kept fighting through it all with a smile. But she saved her biggest smile for when Chive Charities' own Development Specialist Haley dropped by to see her in the hospital before she could go home. She brought KCCO goodies - stickers and pillows - because she knows the way to Faith's heart.
Now, thankfully, she's home and doing well just in time for the holidays. Happy Holidays to Faith & family! KCCO!
Read the original story HERE.
Her family couldn't stop thanking the generosity of Chive Nation and all the Chive Charities members whose monthly contributions allow us to change lives like Lucy's. "Thank you all so much," they told us. "You'll never know how much."
KCCO, Lucy, and Merry Christmas!
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
She "hates that she couldn't make the Gala" but knows that everyone had a great time. In other news, Lacey started 10th grade - the picture from her first day of school is below! From Lacey to Chive Nation, she wishes everyone a "wonderful Thanksgiving and a very Merry Christmas!" We love you Lacey, feel better!
Read the original story HERE.
Recently, Poppy's family found out about an opportunity to rent a beautiful house directly next to the stables where Poppy receives hippotherapy! Not only will it drastically cut down on her commute, but now there is a place for the awesome outdoor playset purchased for her by Chive Fund Donors. She continues to work hard every day on her iPad (pictured here) to continue working on her communication and development. KCCO, Poppy!
Read the original story HERE.
The amazing non-profit announced the next phase of its story:
"We look forward to an era in which combat veterans with Post Traumatic Stress, mild Traumatic Brain Injury and other combat-related challenges can find peace, hope and success through access to individuals therapeutic care and community support. By working together we believe we can accomplish so much more."
We are so proud to stand behind The Pathway Home, and watch as they continue to broaden their reach with Chive Charities' support. KCCO.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
The first cabin (in a series of 3 that were made possible by our generous community) is almost complete. This is obviously a bittersweet moment, both for theCHIVE community and Active Heroes, but more sweet than bitter because we are carrying Justin's dreams out in honor of him. The second cabin will begin construction after winter.
In the Spring of 2016... there will be a ribbon cutting ceremony and then these cabins will fulfill their purpose: to give veterans struggling with PTSD and their families a place to heal, relax, and escape from the stressors and rigors of everyday life.
Read the original story HERE.
Read the original story HERE.
He continues to go back to Rochester to endure testing to his kidneys, heart, sleep, and MRIs, but lately the most pressing concern in Bryce's life has been dealing with some unexpected health issues from his brother. His "big heart" and compassionate nature are two of our favorite things about this sweet boy!
KCCO, Bryce! We can't wait to see a video of you talking away!
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Jess reached out to us after Alaysha's surgery to assure us that she's ok, and didn't get sick, but that her mobility has declined even more. She has been busy these last few weeks posting videos on Facebook about what she is thankful for. Follow her to get into the thankful spirit on her page Hope 4 Alaysha.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
After being discharged (finally) from the hospital, David got the chance to do one of the things that makes him feel most alive - fishing. He and his best friend packed a cooler, grabbed their rods, and spent a peaceful day on the water. So happy to see this Superman out enjoying the beautiful outdoors. KCCO, David! See you at the Gala in a few weeks!
Read the original story HERE.
Although it took him a few months to get on top of his seizures with testing new medications... he came out on top. He always does.
Now, summer's over, but that doesn't mean the adventures end. KCCO, Kellan!
Read the original story HERE.
Eloy had an MRI last week because his spine is worsening. Over the last couple months, he has been experiencing more and more pain. Doctors think it may be caused by a tumor but we are still waiting for the results.
He will also have surgery in January on his feet. Please keep him in your thoughts and send strong, positive energy his way so he remembers he's stronger than anything that happens to him! KCCO, Eloy!
Read the original story HERE.
His mom wanted to express her gratitude to this community, "Thank you guys for everything he really loved his van... and everything ya'll did to make our lives easier. We really appreciate it."
We at Chive Charities and theCHIVE community are doing the same. Remembering his smile and the fierce joy he brought to the world... and taking comfort in the fact that he passed peacefully in his sleep and is no longer in pain. We will never forget you, Bradan. Thank you for letting us be a part of your life.
Read the original story HERE.
The amount this community is willing to give, willing to sacrifice, is immeasurable and difficult to put into words. You leave us in awe. Thank you for actively making this world 10% happier.
KCCO Brandon, Chive MD, and everyone else who has helped Melissa get to where she is.
Read the original story HERE.
It took a group of people one afternoon to make the Retreat a better place. And in doing so, this random, selfless act of kindness made the world 10% happier. KCCO.
Read the original story HERE.
Although Ian lives with this disease every day of his life, "he still wakes up with a smile on his face and determination in his eyes. He teaches those around him compassion, patience, and unconditional love."
Read the original story HERE.
Recently, Chivers went above and beyond for Melissa and raised enough money for her to not only replace her stolen laptop but also to help pay off some of her mounting medical bills.
In the hospital, the most distressing thing to Melissa wasn't her health - it was the feeling of isolation. But when we look at the pictures over the weekend, of her closest friends, family members, and her Chive Nation family who come through for her time and again in her time of need - it seems isolation won't be a feeling she gets much from now on.
Welcome home, Melissa.
Read the original story HERE.
Matthew has spent the last couple months bonding with his beautiful new baby brother Mason Phillip who was born June 22nd, 2015. The whole family is overjoyed.
When dad Kevin got a new job last summer, the family was thrilled that it came with excellent health benefits. Then, the prescription benefit program changed 2 months later, and no longer covered Matthew's medications. The family has been battling with the insurance company to get Matthew's medications (which cost over $2,000 a month) covered because he has a rare disease and the medications help him significantly.
Lastly, Matthew started Kindergarten (for the second time) but now with full days and he's loving it! Matthew is really responding to structure and routine. He has a wonderful team of aides, teachers, and therapists that help him grow and learn at his own pace. This Fall Matthew is scheduled for a sleep study and a spinal tap, but he's a trooper!
His family thanks "all of you for your prayers and support over the last year and a half since this page was started. We still love hearing about and seeing photos of "Matthew's Minions." Many blessings to each and every one of you!" KCCO, Matthew!
Read the original story HERE.
Read the original story HERE.
As if this wasn't enough, late October she travels back to Sacramento (in her safe new van) to have her cast removed and special braces fitted to her feet. Once she does this, she has the OK from doctors for starting the process of learning how to stand and walk! Go Nicole!
She's in good spirits and was giving the nurses and doctors 'knuckle bumps' before being discharged. As her mom told us, "It's really happening for her!"
Soon, Nicole will be walking! We cannot wait to watch you take your first steps!
Read the original story HERE.
Peyton has gone SIX FULL MONTHS without a seizure! We could not be happier for him!
His speech has improved and his fine motor skills have doubled. His dad Derek tells us Peyton is "such a happy little boy. Thank you guys for all your help and support. We still have a long road ahead but you guys have helped make it easier."
That's what we do. KCCO, Peyton!
Read the original story HERE.
"Our little superhero passed peacefully today. He is going to save others lives now. Gavin has touched lots of lives for the better. We were blessed to be his parents. Big brother needs lots of love. He is missing him and thinks he is no longer a brother. We are giving him all the support we can."
Gavin, you made an impact on this world that can never be replicated or diminished. You will live on in our hearts, in Brody's heart, in your family's and everyone you touched. We are devastated... but so grateful for the opportunity to have known your light; your spirit. Rest in peace.
Read the original story HERE.
Keep Mick in your thoughts because he will soon undergo a major spine surgery due to his scoliosis. But in April, Mick had hip surgery and is doing well so, spinal surgery - bring it on!
KCCO, Mick!
Read the original story HERE.
Unfortunately, both of his hips are out of place - a lot worse than before but he doesn't show signs of pain. If the situation doesn't resolve itself, he will have to have his hips operated on.
In better news, Bradan "loves riding in his van every chance he gets!" It's way easier on mom Julie's back, especially because they just purchased an EZ lock for the van which just snaps the wheelchair in place in the van... making it even easier!
Julie added, "We are so very satisfied with the van, thankful for the donors, and everything you and theCHIVE have done for us. You guys have blessed us in so many ways that we didn't think was possible. Thanks again, have a blessed day." KCCO, Bradan!
Read the original story HERE.
KCCO, Melissa. Keep your head up. As history can attest, you're stronger than anything that happens to you.
Read the original story HERE.
The Mineola Fire Department sends along a HUGE thank you to Chive Nation for helping make a drastic change to their department. Before, the fire department struggled to get to all their emergency calls due to lack of a sufficient vehicle and excessive emergency calls (over 1200 a year) in the area. But because of the donations to the Chive Fund, they were able to purchase their very own emergency response vehicle!
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Chloe's mom, Julie, told us that recently. Nothing warms our hearts faster than hearing how grants from Chive Fund have changed lives. Chloe is doing well, having both "good days and bad days but mostly good." She's still going to the doctor's a lot, and that's where having the van goes from being a luxury to a necessity. Chloe can recline in her wheelchair and watch Barney on long trips, she is very happy every time she rides in her van.
Julie ended with, "I hope Chive Charities and their donors know how much their generosity helped our family. Caring for a child with special needs can be very trying and stressful but it can also be a gift and an adventure. Chloe can not speak but she has always communicated with her eyes and the first time she got in her van I could see relief and excitement in her eyes. If she could speak she would have said thank you so much! So behalf on Chloe and my family - thank you so much!"
Read the original story HERE.
Whatever camp means to campers—horseback-riding, archery, fishing, stage night, ropes course, or just having the freedom to be themselves—these children are growing in the knowledge that there’s more to who they are than just their illness. We thank the Chive Community for being a part of The Painted Turtle family and helping campers Dare to Be!
Join us as we kick off our fall season, full of family weekend camp sessions, camp hospital visits, and holiday fun – all at no cost to campers and their families.
“Everyone needs to come to camp. Moments at The Painted Turtle are moments that will stay with you forever. You get to be part of someone’s life and, if you’re lucky, you can help change it.”
– Summer Staff Counselor
Read the original story HERE.
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Read the original story HERE.
Read the original story HERE.
His mom wrote, "As far as his stiff skin goes, it has spread faster than any reported case. His hips have turned to actual stone." He now sees a dermatologist, a pulmonologist, and specialist in rheumatology, endocrinology, neurology and oncology! Moving forward, he will be completely home-bound except for a two-hour window on Thursdays for him to play with friends.
Hopefully, Jaiden will be the recipient of a service dog soon. Although it may take a while, he needs and deserves a friend. KCCO, Jaiden. We're behind you, buddy.
Read the original story HERE.
In the last year, Aniston has only had one hospital admission, which is great news. However she continues to have seizures, many of which occur during the night. Her parents spend the bulk of their time making sure she is still breathing in the middle of the night! Two things they hope to acquire in their future are a service dog for Aniston so she can have a dog atune to her needs always close by. The other is an underground pool, recommended by her PT to continue Aniston's therapy.
Aniston's mom wants to thank everyone for their continued support, saying they "are appreciated more than you know."
Read the original story HERE.
From the perspective of one of the ATS patients: "With the euphoria that came from this completely improbable and remarkable meeting also came a lot of relief: relief over getting answers about a condition which affects your child’s life so heavily; relief over hearing about what research is being done; or, for the sufferers like me, the relief of finally meeting in person somebody who experiences this cruelly rare genetic condition just like you. That was an experience I had never truly fathomed, but the happiness I got from simply being in the same room as other ATS kids (and adult) was immeasurable. For many, parent, sibling or sufferer, the biggest relief was being in the company of someone who, on a deep, automatic and unspoken level, could simply understand."
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Because Reid was one of only 30 patients in the world to undergo this treatment there is still so much unknown about what his future will hold. The Underwood family remain hopeful and have faith that he will be the one to help the medical advancement and treatment of this horrific disease.
Audra tells us one last time, "Thank you for all that you have done for Reid. It is just truly amazing."
Read the original story HERE.
As many of you may remember from our last update on Trey, he is undergoing several surgeries in hopes to regain motor functions he has lost. His father recently reached out to let us know “Trey’s first surgery went well and we go back the 5th of August for the second."
Make A Wish granted Trey a wish and of course you should know what it was!!!! THE FAMILY IS GOING TO WRESTLEMANIA TO MEET JOHN CENA!!!!! His Dad told us "He was so so happy and asks when it is we are going weekly!!! Thanks again for everything you have done for our family.”
More updates to come after our hero Trey meets his idol!
Watch Trey walk in Physical Therapy! Keep it up, Trey! Chive Nation is behind you!
Read the original story HERE.
Charleston has had a great year! The bathroom and lift have changed the Goeppert's lives dramatically. Cash absolutely LOVES to shower in his new bathroom everyday at 4pm - like clockwork. His mom tells us "It's hilarious because no matter what we are doing once 4 o'clock hits it's shower time! He loves the lift too. It's great because not only does it help transport him around the house, but it gives him a different perspective too since he is up higher and can turn and see in all directions."
As for what has happened this last year.....Cash is going into Kindergarten!!! He loves school and is very excited to make new friends.
The other big news in Cash's life is that he is going to be a BIG BROTHER!!!!! About a year ago he started asking his parents for a brother (after his uncle had a son, his cousin), so we decided to go for it and luckily we ended up with a boy, ha! He would've loved a sister too, of course, but is SO excited to be a big brother. Colton "Cole" is due in September. The Goepperts just had a "Big Brother party" yesterday for Cash. He cannot wait to hold his brother and teach him how to be a cool dude just like him.
You'll be a wonderful role model of strength and determination, Cash!
Read the original story HERE.
Read the original story HERE.
And then, as if he willed them himself, they did. Miracles started happening for the Stein family, and then they started gaining steam. Then, they exploded into a new life – a dream life – that felt like “winning the lottery twice.” The road to your dream is littered with obstacles, as anyone can attest. There were complications, bad luck, and disappointment. But there were also surprises, random acts of kindness, and unfathomable support. Heston thought it would be easier to show you their journey than to tell it, so you can see the Stein’s journey HERE.
Building this house wasn’t easy, but since when is anything worth fighting for easy? It isn’t easy for Griffin to eat through a tube, or never see his brother and sister’s faces. It wasn’t easy to live in a house that he didn’t feel free in. It wasn’t easy for this brave family to ask for help.
But now, after the dust has settled, it’s time to pause and reflect. Krissy put it best, saying that in the middle of the flurry of raising kids, packing lunches, and driving to school, her favorite thing is to “have a cup of coffee and sit quietly in this home that the Chive built. I feel grateful every day, not only for this home, but for the love and support that came with it.”
And at the end, the miracle is this: it isn’t what you have, it’s who’s by your side. The Steins don’t just have each other. They have us.
Read the original story HERE.
The goal was originally set at $78,000, but anyone who has watched Chive Nation get behind a cause before knows that the goal is their jumping-off point.... not their destination. They hulk-smashed the 78K mark, which would cover the cost of Justin's dream cabin, and raised over three times as much. Chive Nation took on Justin's dream as their own and went above and beyond, just as he did for our country.
Active Heroes is working as quickly as possibly to make sure Justin can see his vision come to life. Justin continues to fight a tough battle against his terminal cancer but the support of Chive Nation has given him reason to smile.
Read the original story HERE.
Jennifer said, "This van has been a life-changer for us. I no longer have to worry about it breaking down anywhere, anytime. Long-distance trips to see her specialists no longer worry me. She now safely rides facing foward and boy does she look around at her surroundings! It is so neat and rewarding for me to see her taking in her environment."
This past Saturday the girls were at a Target store and saw a car with a "Keep Calm and Chive On" sticker on the window. Jennifer wrote a note, thanking them for the support of theCHIVE and that because of support like theirs, she has a van to safely transport her daughter."
She says, "Thank you again Chive Charities! I am grateful EVERY day!"
Thank you for inspiring US, Jennifer. You and Dakotah show us that nothing can get in the way of leading a full and adventurous life.
Read the original story HERE.
Read the original story HERE.
She said that if it wasn't for the help she received from Chive Charities, she would never have been able to do all these fun activities! She met up with Chicago Chivers, was able to get Scarlett, her therapy dog, drive up to Wisconsin and go wake boarding, and participate in activities with Adaptive Adventures! This organization provides adaptive sports for adults with disabilities, and Pearl is also working closely with Canine Companions for Independence because of her wonderful relationship with her therapy dog!
Well, you're officially winning at summer, Pearl. Thanks for inspiring us all!
Read the original story HERE.
KCCO, Dawnavyn!
Read the original story HERE.
So thank you, Chive Charities members, for completely changing this sweet girl's life!
However, Nicole also has some serious surgeries on the horizon. On Jully 22nd she will have her tonsils removed because they're blocking 80% of her airway. August 4th she will have an achilles tendon surgery at Shriner's in Sacramento. In September, she will have to have surgery to repair her soft pallet and remove her tracheotomy. So there is a lot coming up for this little fighter! If you'd like to help the family with the cost of medical bills, you can do so HERE.
But she's still finding joy in every day. She and her twin sister Annabeth recently celebrated their 2nd birthday! Mom tells us, "each birthday is so special for her." Nicole has mastered sitting up on her own and also is very talented at getting into cupboards and messing up supplies, etc. Sounds like she's got the 2-year-old thing down!! KCCO & Keep your head up, Nicole!
Read the original story HERE.
Creativets Founder Richard Casper said “the school was blown away with the amount and the content of the work. They want to keep doing this every year and help me expand it to other schools. Some of the vets said it's a life changing event and has helped them out and they will continue to do art. All around it was a great experience.”
They hosted a gallery open to the public, where people could come and view the work so many veterans had (literally) poured their heart and soul into.
Read the original story HERE.
In better news, she gets to go home tomorrow! Her family is overjoyed, and Zoe had a special message for the Chive community who sent her messages of strength and positivity while she was in the hospital.
Many people have been asking us how and if they can donate to Zoe and the Lush family. Up until this point, they had never made one. Then a friend set one up for them, and they have shared it with us.
If you would like to donate to Zoe you can do so HERE.
Read the original story HERE.
Green Hill Therapy is gearing up for their Annual Hoe Down on the Hill taking place on September 19th. It’s an evening of music, BBQ, drinks/Bourbon tasting, auctions, magical moments and more that will benefit the organization and the children with special needs we serve. For more information head HERE.
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His mom told us, "He looks so great and is sooooo happy! I can't thank you all enough for what you've done for him! You've changed his life forever!!!!
As for Christopher - he finished his 1st year of high school and is now on summer break (so his friends haven't seen his new top teeth yet - he's excited to show them in September!) It's priceless to see him be able to smile and laugh (without worrying he has no teeth or his temporary ones will fall out) and to see him be a little more self-confident instead of self-conscious!"
We're so happy to have helped put a smile on your face, Christopher!
Read the original story HERE.
One week after Kellan stood, he took his first steps in the Gait Trainer! Check out the amazing video HERE. Go Kellan!!!!
Also, now all but ONE of Kellan's therapy appointments have been moved to their home! This is amazing for Kellan's family, as it has reduced their stress just a little. And as his mom tells us, "As always, no matter what, Kellan stays a happy boy, always smiling, and always putting a smile on everyone else's face."
Read the original story HERE.
Read the original story HERE.
Not only did he attend his prom alongside his brother Adam, but he was also able to graduate with his class!
This was a proud day for his mother who had no idea what to expect when Luke was born. Luke has defied the odds and continues to make his family proud. Congratulations Luke! Chive Nation is behind you!
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
For fun, the family recently took a trip to Disney World. They had a blast. Back in January, there were a couple of 70-degree days, so they took advantage and fired up the pool! Billy said that getting some exercise in the morning, stretching, and moving, makes for such a better day! On the days that he begins in the pool, he doesn't need to take as much pain medication!
He still gets to drive himself and his kids around. He says being able to drop off his son at school and run errands like grocery shopping mean everything in the world.
He signed off with, "You guys are so amazing, all of the Chivers & Chivettes across the world are amazing people, that create chain reactions of kindness and generosity!"
Watch the incredible video of Billy walking in his prosthetics HERE.
Read the original story HERE.
Thanks to the Chive Fund grant Francisco is able to attend weekly speech therapy sessions and his mother is hopeful he will learn how to speak more soon! He can say ba-ba-ba, mama and papa. When he cries and laughs it's a different sound now. Great work, Francisco! We're behind you all the way!
Read the original story HERE.
Melissa is giving her first inspirational speech this June to a class of 4th graders who had to read and watch her story. She is so excited! Her health continues to improve and her family hopes this is a turning point for her.
Read the original story HERE.
He still uses his room daily to wind down and it's still damn near impossible to get him down. We've only had a few days of sun so the room has been a savior with school being out.
Also, The University of Oklahoma soccer team volunteer coached a special needs soccer team this year so we just finished up our 1st season of soccer. Denver absolutely loved it!
Read the original story HERE.
Her mom told us "She has had an improvement with her ability to focus and she seems to be following verbal instructions better. Her verbal skills are about the same, which is a huge hindrance for us all. I am still hopeful that we will see an improvement though. She uses her PECS book to show us what she needs, but sometimes she seems overwhelmed by it. She hasn’t been having any seizure activity which is a huge blessing! Overall, she is healthy. Our biggest concerns are her developmental delays, but she is such a happy and loving little girl!!! We are very thankful for all Chive Charities has done for her!"
To follow Tyley's progresss and to see a full video of the room, follow her on Facebook HERE.
Read the original story HERE.
Read the original story HERE.
The Wildland Firefighter Foundation rededicated the statue at the Boise Airport this month, returning it from Arizona where it was taken when 19 firefighters died there in 2013.
Jack Wilson, the man who came up with the idea of bringing together all of the wildland firefighting agencies in coordinated management in the 1970s, made the point that the statue is not just to commemorate the fallen.
“We dedicate this statue to all firefighters,” said Wilson, 96. “May God bless them all.”
Read the original story HERE.
"Things have been going great. I started back to work full-time at the fire department. and my co-workers worked my shifts for me until I could came back, about 2 years. I'm now working in an administrative position at our Fire Marshall's office. I've been working out daily doing at least a mile around the track. Also, I've been lifting weights 2-3 times a week and I've been rowing 1000-2000m twice a week as well. The FES bike has been extremely instrumental in keeping my legs strong.
I've regained a little thumb movement in my right hand and some in my left, as well. It's been a long, slow road to recovery but the scenery is great. I want to thank all of you at The Chive and all of the Chive Nation for their continued support."
Read the original story HERE.
Creativets is in Chicago with the Veterans referred from theCHIVE attending their first art therapy program. Classes are in full swing and by day three they had a guest speaker. William J O'Brien who is a teacher at SAIC and a world renowned ceramic artist taught for the first half of the day. Keep up the awesome work guys!
Read the original story HERE.
LNVB holds an annual advocacy event in DC and their most recent event was a huge success. This year’s topic, “Creating Veteran Pipelines Into Civic Solutions,” addressed ways businesses, legislative leaders and community members can leverage veterans as assets in communities across America. While their military service is lauded, veterans often return to communities and confront barriers to employment and community engagement. Panelists illustrated how leadership and technical skills acquired in the military can translate into the civic sphere. LNVB seeks to reframe the conversation around traditional notions and expectations of veterans and how these individuals can serve as innovative resources for community efforts, business solutions, and social enterprises.
Watch this video for a closer look into what Leave No Veteran Behind does for our heroes.
Read the original story HERE.
The National Emergency Fund has also been helping with natural disasters at home. The American Legion created an NEF response kit to assist department and post leaders on best practices before, during and after emergencies. The kit contains brochures that explain how to set up an NEF response team, locate affected Legion Family members, assist victims in filling out NEF applications and generate good public relations. A response team from The American Legion assisted tornado victims in Tupelo, Mississippi last May.
Read the original story HERE.
In other big news Xavier graduated from Kindergarten last week! His mom told us, "Who would have thought that a child who was given a life expectancy of 2 years would be going into 1st grade? We couldn't be any happier to see him flourish in the positive and nurturing environment of his school."
Quinn also recently turned 1! And the two siblings have a very special bond. He smiles even when she is crawling all over him. Mom says when Xavier comes home Quinn always gets excited to see his school bus and says "Vee-er." Keep it up, Xavier! You've got Chive Nation behind you.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
“Typically, we go out on weekends but all weekends in June and July were booked solid when little Chad's family applied. His cancer is aggressive and sadly, he might not make it until August so we got our gear and made a special visit to him and his brothers and friends on Thursday afternoon. They had a BLAST and so did we! The entire neighborhood came out to check out the celebrities with a horse in his yard.
My favorite part of the day (besides the touching surprise, rides and crafting fun) was that his older brothers took the soda that was leftover (we bring pizza + pop for up to 30 people) and set up a stand to sell it to raise money for cancer research. Such entrepreneurs! We bought some 😊 Hope this email brings you joy knowing that it's because of you and your foundation's support that happiness can be shed to families going through rough times.Thank you for all you do for us and for so many deserving families!”
Read the original story HERE.
This newly created video showcases one of the client-dog teams that the Chive Charities supporters helped fund with their generous donation last year. In this video you’ll hear Kimberly and Lovey’s story, "I’m not sure how we can thank your supporters enough for their support."
Read the original story HERE.
The Lochtes were devastated – until they discovered PACT’s World of Care, our child-care program for children with complex medical needs. As soon as they arrived, the Lochtes felt relief knowing we would provide the care Matthew needed and deserved. Matthew has made incredible progress both medically as well as with his development since first attending PACT.
“We’re incredibly lucky that we found PACT and that they accepted us. I’m in awe of what they do there. They care for Matthew and all the children as if they are their own. They saved our family.”
-Matthew’s dad, Hunter Lochte
Read the original story HERE.
Says his mom, "DJ has fought this tumor off 3 times now and continues to show such amazing strength and resiliency, which we can't thank God enough for giving him. He's such an inspiration to many especially myself. During this journey we've been placed in a financial hole filled with medical bills that we're pretty sure we will be paying on for a long time to come. I mean we were still paying on the bills from his first battle with this monster and now we have this on top of it. Trust me, we'll take paying these bills for the rest of our life if that means we get to have our precious boy with us but it would be nice to get out of this hole if possible. If you want to assist DJ you can donate HERE.
Thank you Chive Nation and Chive Charities for all you guys do. We're definitely chivers for life!!"
Read the original story HERE.
They write, "We are also continuing to offer support via our On the Line Hotline, a 24/7 hotline specifically available to FDNY firefighters and their family members and an Internet Counseling Program, a Cognitive Behavioral Therapy counseling program available on line, and therefore at one's fingertips at whatever time."
The New York City firefighter community was particularly impacted by the fatal fire of March 21, 2015 where seven children died. Dennis Smith, a retired FDNY firefighter commented that while firefighters would never compare their grief to that of the families, “Still, our pain is real, and we must absorb it and move on to the next job.” This comment underscores the cumulative effect of multiple traumas as well as the coping style of most firefighters--they necessarily "move on". Friends of Firefighters, on the other hand, stands ready to provide services via the Outreach Team, Peer Support Program, and Mental Health and Wellness services.
Outreach is a critical conduit to mental health services for firefighters. Fof's Outreach Team travels from firehouse to firehouse talking about the availability of services they offer and educate the population about the value of mental health services. Outreach workers are not counselors, but their work is essential since the continual reaching out that they do is the only way to succeed in reaching the target population. They make help more available, more accessible, and more user-friendly. The Outreach Team knows when to stay for lunch and when to simply drop off brochures and information. It is their job to visit each firehouse several times a year in order to meet the different tours or shifts, and to continue to remind them of the services provided.
Lastly, the Annual Fall Gala is just around the corner! Mark your calendars- October 16, 2015.
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Recently, WFOH encouraged one of the patients they fly to apply for a Chive Charities grant. That patient was Audrina who has quickly become Chive Nation’s sweetheart. Thanks to WFOH the family not only received a Chive Fund grant for an ADA vehicle and ADA door for their home, but they also become the recipients of our flash campaign which has raised over $137,000 and continues to climb.
Thank you WFOH for continuing to make a huge impact in your community!
Read the original story HERE.
"So with the new jaws and the old we are able to continue teaching the Columbia College Fire Academy's Auto Extrication class. This class was the last skill that the class of 23 students had to take before graduating. The Chief of the academy called me the day before the class was supposed to start and said that he had cars lined up but everyone donating bailed out. I was able to contact Vics Towing of Sonora, Ca. And the owners said that they had already tucked some cars away for Columbia FPD to train on. And would be happy to pull them out of the yard and facilitate the trading with us. The next day we showed up and had 2 complete cars and a partially destroyed motorhome. While we were there training a man pulled up in his Pathfinder got out and handed me the keys. Told me he's donating because it could one day be his family stuck in the car then he left. Amazing."
Read the original story HERE.
Read the original story HERE.
“The last couple of months have been very difficult. Kellan's seizures are out of control. We have switched doctors trying our best to get Kellan the care he needs. Yesterday Kellan had a seizure that kept him from breathing for over 2 minutes (his absolute worst seizure right now). His lips were blue and I tried to give him rescue breaths while my husband called 911. I have never been so scared in my life. Unfortunately one of his big sisters witnessed this (she is 4), and was rubbing his head telling him 'please don't die Kellan, please don't die Kellan.' I tried my best to stay calm and never said the word "die", but unfortunately she has been around this stuff too long and knows a lot of what's going on. Kellan was unresponsive until the mustang fire dept arrived, but they were able to help him perk up a bit. He still had breathing problems in the ambulance but was doing better once we arrived at the ER. His neurologist is trying hard to help him but it doesn't seem like he is responding to any medications. So far he is on 3 different meds. Our next plan of action is to try the ketogenic diet to help. We have had some scary things thrown at us, but this is by far the scariest. I just feel so helpless. We could use prayers, positive thoughts. I don't know what I would do if something happens to him. We all love him so much”
Please send him your thoughts and positivity.
Read the original story HERE.
Pearl wanted to tell Chive Nation “I can't thank you enough for all the help you have given me. This organization is fantastic. Because of Chive Charities I get to enjoy wakeboarding next weekend because I have transportation. I didn't think I'd have the opportunity to do that this summer. Fun Fun!”
Read the original story HERE.
Read the original story HERE.
The kids started using the new classrooms, therapy spaces, and volunteer room the week of March 23! The first eight bedrooms opened April 1, and within four hours, all were spoken for. We had 56 kids wake up at the shelter this morning, the youngest a one-year-old in the crisis nursery. 32 total beds in the addition…next eight will open July 1, eight more in 2016, and last eight in 2017.
Growth plan allows for funding and staffing to keep pace.
Read the original story HERE.
Zoe is 4 and a half now, and just got her tibias re-rodded. They were growing out and had some complications of the bone starting to bow.
She's been on a new medicine called Zolondronate and is doing so well that she only needs infusions every 6 months now! She has a new wheelchair that is called a Tsunami Little Wave. Her kyphosis in her neck is still severe but she wears the neck brace 24/7 and that keeps her stable. She is allowed minimal breaks from it and of course she loves the time out of her brace. Her bone density isn't strong enough to do her spinal fusion and decompression yet so the family will have to wait a few more years for surgery.
Keep it up & KCCO, Zoe!
Read the original story HERE.
Read the original story HERE.
In other news, Bryce has also recently been making big strides in his verbal abilities and vocabulary! On the flip side he has regressed with his potty training, which the family expected due to the degenerative nature of his rare disorder. But says his family, for now they are "living in the moment."
Read the original story HERE.
Next month the family will head to Florida for Gio's Make-A-Wish trip to Disney World. He is very excited about that. He continues to receive treatment in San Francisco and has his daily medication, but otherwise he has been very healthy. Keep your fingers crossed that it stays that way!
Read the original story HERE.
As you can see, Zack and his family had a very special day and some much needed fun. Zack also saw a specialist in Florida who recommended another MRI for a possible lump on his neck. The family returns to St. Louis May 6th to see his primary specialist who will determine the best course of action.
Please continue to keep Zack in your thoughts as he fights to push through these debilitating symptoms with a smile on his face.
Read the original story HERE.
Recently, we checked in on Christopher to make sure his surgeries are coming along! His mom Sandra wrote back, "Christopher has been going to the dentist every week, and his top teeth are almost done! They made Chris temporary teeth for the bottom that are cemented in, but before they do anymore on the bottom - they are going to give Christopher a little break because his dental work has been extensive!
Thanks for checking in and I can't thank Chive enough for changing Christopher's life!"
Read the original story HERE.
Natalie told us that with everything going on with Jaiden's health issues lately, it's been a while since she's seen him smile. The football team is a way for them to "catch a break" and enjoy life a little. Go Team Jaiden!
Read the original story HERE.
Dawnavyn enjoying some quality porch time with her husband!
At the end of this month, Dawnavyn will undergo brain surgery #6. Doctors will be putting in a different type of VP shunt that they hope will do the trick. She is still having seizures but is making giant strides in managing them. She has triggers that she can respond to when one is coming on, and she has learned how to minimize their negative effects.
She adds, "Thank you again. For everything."
Read the original story HERE.
Camp will be hosted June 6th-June 13th at Wonder Valley Ranch in Sanger, CA. The Young Adult Summit, held during Presidents Day weekend at Camp Ocean Pines in Cambria, saw the highest attendance in the history of the program with 36 burn survivors, ages 16-20, and 15 volunteers. Our Firefighters in Safety Education Burn Prevention Program is continuing to expand into communities throughout California.
Last year, through the FISE Program, we taught burn prevention skills and gave prevention material to more than 11,000 California elementary students.
Read the original story HERE.
In May, U.S. World War II veterans will cross the pond to join numerous nations throughout Europe to pay homage to the 70th Anniversary of Victory in Europe.
The Greatest Generations Foundation will again sponsor a contingent of 20 U.S. wartime veterans back to Europe for their last time to honor and remember their fallen comrades, but they can not do this without the help of their amazing donors.
If you are interested in helping a U.S. World War II veteran back to Europe for the 70th Anniversary, please consider supporting their return back to Europe to honor and remember their fallen brothers that made the ultimate sacrifice seven decades earlier. You can donate HERE.
Read the original story HERE.
This Friday Oakley has a scan that will give them some insight into how his major surgery last August went. If the scan comes back with positive results, Oakley will not have to have surgery again. So cross your fingers, Chivers! Other than that, he's enjoying baseball games as a part of "Team Impact" and has had a blast cheering on his team! His family is also doing their Spring/Summer giveback for their local Children's Hospital to pay it forward. It collects aft supplies for the Child Life team. They know how important this is because of how much Oakley loved painting and drawing to take his mind off things while he was in the hospital.
Read the original story HERE.
Read the original story HERE.
"Things are moving right along up here in Cleveland. It seems the doctors have a grasp on the issue. With a swift change in antibiotics, my white counts are down and I'm feeling much better. It's seems the infection is clearing. In talking with my doctors they told me I might be Texas bound on Monday. And it couldn't come too soon, I'm homesick.
Love you all and thanks for the support! Hope everyone has a wonderful day!"
KCCO, David! You're an inspiration to us all.
Read the original story HERE.
When Melissa returned home we sent her flowers to know we were thinking about her, but waited until recently to reach out and check on her directly.
“I’m very up and down in every way- obviously physically, emotionally, and mentally. I’m struggling, this has been a very hard few months and while I was in a coma I literally felt that I was being pulled in two directions between life and death and I believe with all my heart that my family and friends and every single Chiver out there that kept praying for me and sending positive energy my way is what pulled me in the right direction and saved my life. It’s one of the only things I can remember while being intubated is that feeling of being pulled. I had so many people come and see me from my childhood to The Chive MD family just to hold my hand or be there even when I didn’t know they were there, I feel really blessed that I had all those prayers coming my way and saving me. I’m not out of the woods yet, my doctors believe I have some auto-immune issues which they haven’t figured out yet so until we get some real results and a treatment plan, it’s all in the works.”
In case you missed Melissa’s original story about how Chive Charities and the generous Chive community raised an unbelievable $450,000 to build Melissa her dream home, you can read that HERE.
theCHIVE is a family, and that means that you’re never alone. We love you and we’re behind you, Melissa.
Read the original story HERE.
Sue writes, "As far as Kelly's health goes, unfortunately we are looking at the possibility of surgery in the next few months. Her left leg is out of the hip socket and the socket is worn down. She's going to need metal brackets put in both hips. It's a risky 4 hour surgery, but without it she may end up in lots of pain. We're in the process of seeing various doctors to ensure they are alright with the surgery. She will have a long tough recovery at home that is sure to challenge our nurses abilities. But thanks to Chive Charities we are able to focus our money to paying other bills. We no longer need to worry about a van or money for copays."
Read the original story HERE.
Read the original story HERE.
Last October, Bubba started ABA therapy (Applied Behavioral Analysis). The progress from ABA therapy for Bubba is "remarkable." He went from being mostly non verbal to occasionally speaking relevant sentences! He is starting to communicate and his family couldn't be happier. Also the Schaefer family will be at the capital on April 20th rallying at 'Disable the Label,' which is advocating for insurances to cover vital therapies for autistic patients.
Oklahoma is one of only 5 states left with no mandates, to sign the petition click HERE.
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For more information on Project Odyssey and how to apply, please contact: projectodyssey@woundedwarriorproject.org.
Read the original story HERE.
David Cosner has been in and out of the hospital for the last four months. Doctors have not been able to figure out why his condition is worsening. So to hopefully find some answers, he was flown to the Cleveland Clinic- the best Wegener's research hospital in the country- and yesterday he received his 206th bronchoscopy.
We will keep you updated, but in the meantime David needs our support. Send him positive thoughts and messages. KCCO, David!
Read the original story HERE.
Mom Gina told us, "She is so happy and after just walking 100 steps in her walker she is sweating and we ask her how far did you walk she will say, '10 miles and my legs feel like noodles.' FAITH IS AMAZING!!"
Keep up the awesome work, Faith! You continue to inspire us all.
Read the original story HERE.
Bradan is doing really well. He and his family have a consultation with his pulmonary doctor in May to see if there is a possibility that he can maybe have his trache taken out. A couple months ago he was taking 14ml of Phenobarbital for seizures and now he is down to only 6ml! Nown that doctors are decreasing some of his meds so he isn't as sleepy and is much more alert during the day.
His family told us, "The van is still working great and we couldn't be more satisfied with what ya'll have done for us. Thanks again for helping make our lives much easier."
Read the original story HERE.
The results of the children on the oil have shown huge improvements. They have used the oxygen machine Chive Charities provided them a few times and it has been a life saver... Literally. Peyton is almost on track with where his age group is and starts early preschool in the fall to hopefully catch up.
KCCO and Happy Birthday, Peyton!
Read the original story HERE.
This is more than her parentsever thought would happen. Her doctors and therapists are so pleased! She's able to sit up now and interact with her parents, which she's never been able to do before.. And she is loving her new found level of "noisiness." Lots of squeals of delight. Other than her seizures, which she is still struggling to get under control, she is doing better than anyone expected.
Read the original story HERE.
We were so happy to brave the weather and play ball with some wonderful people last Saturday, March 21st. We got some tips from some special visitors, MLB players, who came out just to play with the kids of CTX Ability Sports! Keep it up KCCO Ability Field!
Read the original story HERE.
Read the original story HERE.
Ryne Lorek received the Texas Future Trail blazers award from Lex Frieden, the chief architect of the Americans With Disabilities Act, signed 25 years ago. He attended with his father John Lorek, the Executive Director of CTX Ability Sports and Texas Advocate for the U.S. President's Council on Fitness, Sports, & Nutrition program. Ryne is posed to be the future Executive Director of CTX Ability Sports. CTX Ability Sports mission is to have Adults with disabilities run this program for children with disabilities. Congrats Ryne, & KCCO!
Read the original story HERE.
Xavier was recently featured in an article by the Baltimore Sun to raise awareness for Rare Disease Day, which was February 28th. Xavier turned 6 in march, 4 years past what they were told is the average life expectancy for his condition. Xavier is a fighter and his mother reports he has grown 4 inches and gained 4 lbs at his last doctor's appointment!
Next up is possible surgery for his scoliosis, but for now he continues to grow and his family is overjoyed with his progress. KCCO and HAPPY BIRTHDAY, XAVIER!
Read the original story HERE.
We're so happy you're home and safely made it through surgery, Gavin! Chive Nation is behind you every step of the way!
Read the original story HERE.
In other news Gavin was recently able to attend the Mom-Son dance and Gavin looked very dapper in his little bow tie. The DJ played our song "Somewhere over the rainbow" and we danced. He also participated in his first pinewood derby and helped paint his car (and painted himself too).
Chivers are behind you as you go into surgery Gavin! Sending love and thoughts your way! You're a superhero! KCCO!
Read the original story HERE.
Trey and his family will be traveling to Kansas City on April 17th for the first part of his DBS surgery. After the first lead is placed in his brain, he has to wait a few months until it's safe to place the second one. In order for his family to be there to support him through these invasive surgeries, they have to cover travel expenses and accomodations for both surgeries, which can quickly add up. If you want to assist them you can donate here.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
We touched based with Bryce’s family to let them know Chive on Minnesota (https://www.facebook.com/Chivemn) is donating proceeds from their latest Chive Nation T-shirt sale to aid with his continuing therapy and travel costs. Bryce’s mom was overjoyed and also let us know he is slowly starting to sleep better and his school is starting to work on new communication devices with him. Bryce’s speech therapist tells his family he is extremely smart but just has difficulty expressing himself. They will continue to work hard to give this brave boy his strong voice.
Read the original story HERE.
Judith is has been seizure free for 6 months! She’s also sitting unassisted and going from laying to sitting unassisted and saying words now. Her ipad has also been helping her vision greatly! She sleeps in her own bed now and LOVES it. She's becoming more and more independent. Thanks again Chive Nation!
Read the original story HERE.
The Spain family had outgrown their current vehicle and badly needed an upgrade to transport JD to his doctor appointments. Chive Charities donated $100,000 to purchase a Freightliner and retrofit the monster van into an ADA life support vehicle. It’s been a life-changing tool for the family.
Also, as an afterthought I mentioned that JD loved the Houston Texans. JD won’t go anywhere without his Texans hat. He’s always wanted to attend a Texans game and see his favorite player, J.J. Watt. There was really no call to action in my story though. The Texans were in the midst of a playoff hunt and I wasn’t trying to cause any unwanted distractions.
Enter good guy, J.J. Watt. Less than two hours after the story went live, J.J. got ahold of us and asked if JD might like to come to the Houston vs. Jaguars game? Um… YES PLEASE.
To say J.J. rolled out the red carpet for JD is an understatement. You have to imagine that, for a pro football player, Sundays are the busiest days, even more so for superstars like J.J. Watt. But it was J.J. that made JD feel like the star of the show. JD’s mother, Rhonda, described the experience,
“OMG! It was the most amazing day ever for JD and the rest of us. I am totally exhausted today. JD was treated just like the VIP’s! The experience was unforgettable. Not only did we get pictures, we were all on National TV!!! How Awesome is that!??
J.J. Watt was so AWESOME and JD loved every single minute of being in the spotlight with him! It makes me cry just by writing to you guys. I am so incredibly proud of JD for making the best of his situation and just enjoying life like the rest of us and yesterday was definitely one of those days for him.
Chive Charities, please tell JJ that we appreciate everything he did for JD and we appreciate you for making everything work for JD & JJ’s meeting. We all had a blast. Everyone was extremely nice and very attentive to all our needs. The experience was something we will never forget. Again, thank you, Chive and thank you JJ!”
Thanks again, Mr. Watt. You’ve remained humble and gracious in success, a model for young kids coming up and all of us here at Chive Nation.
Read the original story HERE.
This is really not a story of how we helped Melissa. This is the story of how Melissa helped us. In the end, Melissa repaid our small generosity far beyond what we ever gave to her.
Melissa would help define a new era of flash charity which has been adopted worldwide. She would solidify theCHIVE as a force in the charity world, sparking a movement that has raised millions for orphaned causes around the world.
Most of all, Melissa would show us all the best parts of ourselves. Her inner incandescence would spark a light we all have inside us. If you spend five minutes with Melissa, somehow the rest of your day is magically better. She has a way of reflecting back all of your kindness with a warmth you take back into the world.
There was this moment two years ago when a girl who could go no farther collapsed in my arms and, in so doing, ignited the world to become a better place.
I hope you love your new home, Melissa. Most of all, thank you.
We love you,
The Chivers
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
In 2014 the YESS Iowa educational wing expansion ramped up! They've come a long way: exterior brickwork is finished, walls are painted, and bathrooms are being installed. Beginning April 1, youth will actually be staying in the new expansion. The new wing gives YESS the opportunity to give more Iowa-are children the second chance they deserve.
Read the original story HERE.
Columbia Fire Protection District received the Jaws of Life the Chive Fund purchased! Chief Conroy was resourceful and was able to use the rest of the grant to buy a fire engine as well as new boots and helmets for all their crew members!
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Illitch Holdings, who owns both the Detroit Tigers and the Detroit Red Wings, saw Zackary’s story and made sure he had not one but two special nights! The surprised started with a visit from the Detroit Tigers mascot, PAWS! Zackary was showered with Detroit Tigers gifts and told he was also going to be a guest of honor at a Detroit Red Wings Game. Zackary’s trip to see the Red Wings was complete with a locker room tour and a special meet and greet with star player and captain of the Detroit Red Wings Henrik Zetterberg!
Read the original story HERE.
Read the original story HERE.
Bryce is loving his educational apps on his ipad the Chive Fund purchased and has recently discovered how to take selfies! haha In other exciting news, Bryce has learned how to say “T T” for his big sister Tatum's name, he used to just grunt at her! Speech therapy is helping Bryce and he continues to surprise his family each day.
Read the original story HERE.
After Mick's story was posted, Chive Nation wanted to go a step further and found Mick's GoFundMe page. Over $9,000 has been raised so far to help cover past and future medical costs! You can donate RIGHT HERE.
Read the original story HERE.
Ian is making strides forward, literally. Chive Nation providied physical therapy equipment that helped him earn a 1st place ribbon at the Special Olympics. We couldn't be more proud of him. Next up: Special Olympicas state competition in November. Good luck, Ian!
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
The Chivers have now helped ease the pain. Billy’s therapy pool is finished and he surprised us with KCCO tiles in the bottom, his "thank you" to Chive Nation. If that wasn’t exciting enough, Billy’s FJ Cruiser is now equipped with his donated hand controls!
Special thanks to John McGivern, David Hamlet , Paul Clayton, James Morrison, Kirk Dearhamer and last but not least Michigan Chiver Brandy Smith who made this hand control donation possible!
Read the original story HERE.
Read the original story HERE.
Aniston received her new safety bed. Thank to the Chivers Donations to the Chive Fund she will now have a safe place to sleep that will provide fall protection, protection from entanglement , caregiver assistance to exit and one hand operation. Aniston's family can all rest a little easier now
Read the original story HERE.
According to her mother, Judith can now roll herself over and sit up now. This is a big milestone for her to reach! Next up is getting Judith to walk which should be no problem thanks to the therapy equipment Chive Charities purchased her.
Read the original story HERE.
Read the original story HERE.
Unfortunately, Sarah tells us, “Caroline has been referred to a dietician and a GI specialist to try to figure out why she's been throwing up almost daily since late July. We started eliminating things from her diet to try and pinpoint the problem, but no luck so far.” Keep Caroline in your thoughts!
Read the original story HERE.
The bathroom remodel is complete! Ashley will now be able to safely bathe Cash. She is so appreciative to the Chivers who made it happen. “I cannot thank Chive Charities enough for all that you have done for our family! You guys have been such a huge blessing for us! I don't know how we could ever thank you enough!"
Read the original story HERE.
Gina still struggles with CRPS every day, but that hasn't stopped from making moves in Washington! She has been working closely with Senator Kelly Ayotte (NH) and Senator Thomas Harkin (IA), the Chairman of the Health Education Labor and Pension Committee. The Committee has been working on the new Higher Education Bill. Gina made suggestions to fix the disconnect between Federal education funding programs and the ADA. Gina and the Senators are hoping to enable over 100,000 chronically ill students to attend college each year, complete their degrees, and remain off of social security disability.
Read the original story HERE.
“Friends of Firefighters has recently focused our efforts on improving accessibility to mental health services. We have further eliminated barriers to mental health services by making them accessible from anywhere at any time through our new 24/7 crisis hotline and our Internet Counseling Program.
Friends of Firefighters On the Line is our 24/7 crisis hotline. Callers are offered immediate crisis counseling by counselors trained in firefighter culture.
The Internet Counseling Program (ICP) is a home solution for common behavioral health problems such as anxiety, phobia, insomnia, depression, substance abuse, and OCD. This is an evidence-based intervention that offers support and knowledge to better one's health in the comfort of one's home and at one's convenience.
Additionally, we have hired 3 new mental health counselors with offices in Queens, Staten Island, and Upper Manhattan, and two new outreach workers to provide direct outreach to firehouses and fraternal organizations."
Read the original story HERE.
Read the original story HERE.
Leave No Veteran Behind just celebrated their 5th Anniversary. They held the first Leave No Veteran Behind Investment Forum to celebrate and raise the funds needed for their programs. Chive Charities was the title sponsor of the event. Unfortunately, we were unable to attend the event in person, but the Chive community stepped up in our absence. Chive on Chicago showed up to present the check on behalf of Chive Charities! With over 100 guests at the event, LVNB raised over $90,000!
Read the original story HERE.
Chloe's ADA van has arrived and the family has wasted no time putting it to good use! Chloe's mom told us, “We took the kids everywhere this weekend! It was great! We even went to the lake last night to see the super moon! We would never have been able to do all of these thing if not for the van. We are taking Chloe and her siblings to the children's museum next week!“
Read the original story HERE.
Read the original story HERE.
When last we saw DJ, he was having a rough go of it. After three times beating brain cancer by age of 4, DJ had an allergic reaction to his medication. We took him out to play some ball anyway. The kid never stops grinning.
These days, things are looking up for DJ. The Dallas Cowboys recently treated him and all the CTX Ability Sports kids to a game. DJ's mom happily reports, "DJ seems to be getting more and more energy back. He's been running around and acting a lot sillier." We figured that would be the case. Anyone who meets DJ knows the kid doesn't quit.
A big thanks to all the Dallas Cowboy Chivers!
And now, the Field of Dreams comes to life...
The size and scope of this project is immense. We are thrilled to announce that KCCO Ability Field is nearing completion. The field has been leveled. A basketball court has been installed - remember, this is for all sports, not just baseball. There's a playground and ADA walkways. It's coming together fast!
We want to invite you and your kids to the Opening Ceremony of KCCO Ability Field! The entire Chive crew will be there with the CTX Ability Sports kids. (Mac has even been invited). We can't wait to show everyone the completion of the field where, at last, kids with special needs across Central Texas can safely play all sports!
Opening Ceremony of KCCO Ability Field
747 CR 138
Hutto, TX 78634
Saturday, September 20, 2014
Ceremony Begins at 9:30 AM
We're looking forward to seeing you. Families welcome.
Read the original story HERE.
KCCO and keep up the awesome work, Marcus!
Read the original story HERE.
Well, we at last have the update you've been waiting for. Thanks to the relentless generosity of the Chivers, Melissa recently closed on a new home in Arnold, MD! She is finally on her way to living comfortably and reclaiming her independence! The house still needs a lot of work before it's ready for Melissa, but she is ecstatic. She told us, "I'm a simple girl. I just wanted a fixer-upper. Compared to my third-story prison, my new place is a mansion."
She will be updating the entrance to her home with ramps and widening the doors. The doors will be modified throughout so she can easily move from room to room. The kitchen will get updated appliances that are designed for her height level. She is going to have the counters and sinks lowered to her height. Same thing for the bathroom. The shower will be gutted and a wheel-in shower will be installed.
Melissa continues to be overwhelmed by the giving nature of Chive Nation. She is so grateful to you all. "I cannot believe this is happening because of people. It really helps you to think of the world in a different way. I feel so special. People are giving me a second chance at life. My biggest fear was being alone in a nursing home because I was too sick to work. My biggest fear has been crushed by all of you. I will be in my own home and that is a great place to start this new chapter in my life."
Read the original story HERE.
Part of the grant for Bryce went toward sending the Thibodeau family to the Phelan-McDermid Syndrome Foundation's International Family Conference. Bryce's mom happily reports, “The conference was amazing and at times overwhelming, but we felt a huge relief to know that while there are few, we are not alone and we felt normal there. It truly is a second family."
Read the original story HERE.
Xavier’s little sister, Quinn, was born on June 2nd! His mom tells us, “She is growing like a weed and Xavier is enjoying her!” The Byrd family recently attended the Chive Maryland BBQ. They rubbed elbows with fellow Chivers and thanked them for their continued support of Chive Charities!
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
You may recall that Bryce was having difficulty sleeping. He would always climb into bed with his parents and only get at most 2 hours of sleep a night. We purchased him a weighted blanket and we are excited to report that it’s working wonderfully! “He got a FULL nights sleep in his own bed!” Kelly told us. He is also learning sign language with the training DVDs we got him and learning to use the program on his iPad for nonverbal communication!
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Jaiden’s doctor is concerned because his stiff skin is spreading at an alarmingly fast rate. Jaiden is undergoing more treatment to hopefully slow the spreading, but this is uncharted territory. If it doesn’t work, they aren’t sure what to do next. It is essential to get the home modifications completed for Jaiden as soon as possible. Fortunately, the Chivers are stepping up to help! The first Bona Fide Chapter, Denver Chive is planning a meetup at Rockies Stadium with proceeds benefiting Jaiden! Way to go, Denver!
Read the original story HERE.
After Chivers raised $150,000 for the Wynne family, Billy now has a new truck! Within minutes of the story going live, a Michigan Chiver was able to get the hand controls donated! Now Billy will be independent and able to transport himself. In case you missed the story of how he survived an impossible helicopter crash, read about it HERE.
Read the original story HERE.
Read the original story HERE.
Francisco can hear! And he can already understand his own name! That is a monumental step because usually people who newly gain hearing need time to differentiate between sound and language. Jsha tells us, “Francisco is improving. He is starting to like school now. He is copying more signs and babbling a lot now.” He works with a speech therapist who is helping him get familiar with the FM system. He is on the path to learning language! Way to go, Francisco! Keep up the good work!
Read the original story HERE.
As you can imagine, this takes a toll on someone’s spirits. Send her some love! KCCO, Melissa!
Read the original story HERE.
Gio has been in and out of the hospital this holiday season for a variety of things, including lesions in his GI tract. Gio heads back to San Francisco this week to meet with his specialist to discuss potential surgeries, as well as new medications. Even in the hospital this little man manages to smile when he wins a game of bingo or takes a ride in the hospital helicopter.
Read the original story HERE.
The hit daytime TV show The Doctors had Jaiden and his parents on to bring awareness to Stiff Skin Syndrome. The Rogers family got a big surprise as Nintendo gave Jaiden a travel pack and Braunability and Ride-Away gave the family a new handicap accessible van to help with Jaiden's transportation.
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Melissa’s standing frame arrived the end of November; this allows her to work on her vital physical therapy daily. Melissa has also chosen a realtor who is donating her commission back to the sale of the home. The process of buying the right home is a slow one, but she looks forward to the day she can stand next to a SOLD sign in her new yard!
Read the original story HERE.
Read the original story HERE.
Read the original story HERE.
Sean’s family has been working around the clock to make their second story home wheelchair accessible. The porch shown above is where the wheelchair lift is being installed. The bedrooms were gutted to change entryways and switches, and next up is adding wheelchair friendly floors and lowered cabinets. The Pesce family sends a huge thank you to Chive Nation for helping make this renovation possible!
Read the original story HERE.
John looks shocked for a good reason. David had his 150th surgery and came out with the wonderful news that his Wegner’s Disease is possibly in remission. David is now off most of his medications, back in the gym, attending school, and even able to enjoy a cold brew with his friends. Congratulations David, Chive Nation couldn’t be happier!
Read the original story HERE.
Read the original story HERE.
The updates on our Chive Charities recipients continue to get better. Last May we brought you the story of a little boy named Griffin born with a rare genetic disorder called SOX2 Amophthalmia Syndrome. Amongst the many maladies one with the disorder experiences, Griffin Stein was born without eyes. One of a set of triplets, Griffin and the Stein family were also living in cramped quarters.
The family was living in a two bedroom gingerbread house when we found them. At the time, we posted that theCHIVE Fund had surprised the family with a new Chrysler Minivan and custom wheelchair ramp to help them take Griffin to his physical therapy sessions. The Chivers noticed the Stein’s tiny home in one of the photos and decided a minivan and the ramp were not enough. We could do more. The Chivers decided the Steins needed a bigger home.
The next day Chive Nation raised $125,000 on the Stein’s GoFundMe page in 3 hours flat to build a massive expansion onto the Stein’s home. Construction is set to begin shortly.
The post caught the attention of Detroit Lions Linebacker Coach, Matt Burke. Matt invited the Stein family to join the Lions for their final practice before the home opener last weekend. Chive Charities Executive Director, Brian Mercedes and Community Manager, Angie Cone flew from Austin for the occasion. Angie told me:
“We thought we’d meet Matt at practice the next day. Instead he drove to Royal Oak on Friday night with a box of Lions gear for the family and met us for dinner. Here’s a guy who clearly has very little time to spare and he spent the entire evening with us listening to Griffin’s story. He was so humble and gracious.
The next day we went to practice. With the exception of a few family members we were the only ones there. Matt had set our expectations low. We understood how little time the players had that day, especially before the big game. It was so cool to just watch them practice. But then something happened. We saw THE ENTIRE LIONS TEAM WALKING TOWARD US. We all froze as these huge men walked our way. When they arrived they all kneeled down to get on the triplet’s level. It was so touching.
They didn’t just say hi and leave either. They players stuck around to talk to the family and hang out with Griffin and learn about the disorder. Many of them had read Griffin’s story on theCHIVE and were already familiar with his disorder. The Stein family would say later it was one of most memorable days of their lives.”
Read the original story HERE.
theCHIVE community was just getting started when we made our $10,000 Chive Fund donation to benefit the families of the Granite Mountain Hotshots. John flew out to Arizona for an epic meetup that raised an additional $25,000 with the help of the local community. Prescott Firefighter’s Charities continues to fundraise for the families by selling memorial t-shirts, you can get yours here.
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David had his 149th surgery shortly after his Chive Fund story was released. He came through like a pro as usual and stopped by our office to sign his prized fishing tournament shirt. David wore this shirt during his Collegiate Bass Fishing National Qualifier with a PICC line in his arm. It’s a symbol of his strength and determination, and we are honored to showcase this in our office.
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KCCO, Griffin!
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Zoe has now had her first rodding surgery to help strengthen her legs, and thanks to Chive Nation she is working towards her goal of walking! In addition, Zoe had a vital teeth-capping procedure and is all smiles.
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Silver, Gold and Green members receive the much-desired Green Ribbon T-Shirt. Give proudly. Wear proudly.
Silver, Gold and Green members receive the much-desired Green Ribbon T-Shirt. Give proudly. Wear proudly.
Silver, Gold and Green members receive the much-desired Green Ribbon T-Shirt. Give proudly. Wear proudly.
Chive Charities is a 501(c)(3) non-profit organization dedicated to championing the underdogs in need of public awareness and financial assistance. Through inspiring a new generation to support and raise awareness for the forgotten and overlooked causes, Chive Charities strives to make the world 10% happier.