Before you read their story here, our Chive Charities team is privileged to meet these recipients and their loved ones on weekly video calls. We listen as they walk us through their experiences, laughing at the funny personality traits and crying with them at the moments of heartbreak. Then we take those calls, and their stories, and their need, and we put it all together in a story to share with you.
We’ve done that 473 times since 2012. Today, we’re doing it a little differently.
When we met Daphne and her mom, Kassi, we knew they had a special story to tell. So this time, we’re going to let Kassi share their journey with you in her own words.
From the mom of one incredible kid to all of you - here’s Daphne’s story.
Daphne was born on Valentine’s Day, 2017. It was apparent right away that something wasn’t quite right. She was small, weak and she had difficulty breathing. She spent 12 days in the NICU and had so many tests, but nothing could be found that was “wrong.” We were eventually allowed to take her home.
I (mom, Kassi) knew something was off from the beginning. As a mom, you have access to apps and books that tell you what your child’s development is supposed to be like, what milestones they are supposed to hit, and when. Daphne wasn’t hitting any of them. At all.
We saw a physical therapist who diagnosed hypotonia, which is low muscle tone (where the baby appears limp).
When Daphne was 6 months old, our pediatrician noticed that Daphne’s eyes weren’t working properly and referred us to an ophthalmologist. The ophthalmologist ordered an MRI to rule out a brain tumor. Watching your 6-month-old baby go under full anesthesia for an MRI and waiting to hear if she has a brain tumor was terrifying. That whole day, I paced the hospital trying not to panic.
When we received the results, they were both wonderful and awful. No brain tumor! Hurray! The optical nerve and her eyes had developed normally. However, there were abnormalities in her corpus callosum, the band of nerves that connects the two hemispheres of the brain. A large portion of the corpus callosum was missing (called Agenesis of the Corpus Callosum).
Sometimes this is caused by an underlying genetic disorder, so a full chromosomal study was performed.
A few weeks later we had our answer: Daphne’s 8th chromosome was VERY different from what it was supposed to be. The short arm (called the “p” section) was completely upside down, a big part was missing and another big part was in there twice. It was such an ultra-rare disorder that the geneticist told us there were about 50 other people in the world with it. It didn’t even have a proper name, just a scientific one: 8p inverted duplication/deletion syndrome.
We were in total shock. What did this mean for our daughter? Would she ever be able to speak or to walk? Would she have serious medical issues? Would she die? We left the doctor’s office completely defeated, filed the papers with the details of her diagnoses deep, deep, deep into a drawer, and decided we would love her and support her no matter what came. We would not focus on the negative, we would focus only on possibilities.
Most kids with this disorder don’t talk? So what. We’ll find a way to communicate with her. Most kids with 8p inverted duplication/deletion don’t walk independently? The world is becoming more accessible - we will discover or create a way for her to move in it.
We immediately set Daphne up with physical therapy, occupational therapy, and speech therapy, twice a week each. We realized she wouldn’t be able to go to traditional daycare and found a full-time nanny. How were we going to pay for this? We were so fortunate to have full-time employment with solid (though very expensive) health insurance. We could make it work, just barely.
Over time (I’m talking years, here), our concept of human value and worth changed. We came to accept and embrace Daphne’s diagnoses. There are a lot of them, but each of them makes Daphne completely unique in all the world. I realized that the value of a person is not in how much they can accomplish and what they can do, but how much love they bring to the world. At the end of the day, at the end of a life, that’s all that matters.
The amount of joy and love that Daphne fills the world with is immeasurable. Everyone she meets falls in love with her. Complete strangers come up to us regularly to tell us how special Daphne is and how her smile fills their hearts up.
Daphne is now 4 and a half years old. She is typically very happy and was crowned the class “Dancing Queen” of her preschool. She loves to dance/wiggle to pop music and her favorite song is “Shake it Off” by Taylor Swift. She loves music -- especially when her dad plays guitar and sings Grateful Dead songs for her. She likes to strum along and “help” him play.
She loves it when people sing and will happily clap along, no matter how off-pitch you are. Her favorite TV show is Yo Gabba Gabba, which was on Nickelodeon in the mid-2000s and featured Biz Markie. She has watched every episode so many times, it’s almost silly at this point.
More than anything, Daphne loves to be outside and she likes to be included in all the things we do. We have always taken her camping with us. She has her own seat on the back of our bikes, so she can ride along where we go. When we go on hikes, we bring her along in a backpack or her stroller.
Living in western Montana means that we spend a lot of time recreating outdoors, as do all of our (and Daphne’s) friends. We want to find ways to make the outdoors more accessible for Daphne so that she can be included in the activities we do as a family. We never want her to be excluded due to her disabilities.
The activity we do most as a family is skiing in the winter. For the past two years, we have taken Daphne skiing at our local hill. She rides in a backpack on her dad’s back and squeals and claps her hands all the way down the mountain. Unfortunately, she is now too big to ski in the backpack.
Last year, we trialed a sit-ski at Schweitzer Mountain Resort in Idaho and realized this is the way that Daphne could participate in our favorite family sport without being left home! Not only that, but she could be more independent in her own specialized equipment instead of being carried around by adults.
Having this sit-ski will allow Daphne to spend more time outdoors, with her peers and family, develop independence, confidence, strength, balance, and coordination.
We are equally grateful for her adaptive swing, which stimulates her vestibular system and helps with balance, vision, and coordination. Having an adaptive swing is crucial since she can’t sit up in a typical swing -- 2 minutes of swinging before working on her home physical/occupational therapy program makes a huge difference. It immediately increases her focus and coordination.
We are incredibly grateful to the Chive Community for giving Daphne the ability to recreate outdoors with her friends and family. We can’t wait to show everyone that just because a child has disabilities, doesn’t mean they can’t participate fully in life.
Pretty incredible, isn’t it? Because of donors like you, we were able to purchase a new sit-ski and adaptive swing for Daphne for a total impact of $9,105. Now, Daphne, Kassi, and the rest of the family can keep showing the world what little girls just like her can do.
We will not focus on the negative, we will focus only on possibilities.
Daphne is one more reminder in a group of 473 inspirational recipients (and counting) that with support, inclusion, and encouragement, your dreams are possible. And if we’ve learned anything from our incredible donor family, it’s that the underdogs will always have someone behind them to build them up and change their lives.
If you’re not part of that life-changing community yet, here’s your chance. Let’s make some more dreams come true. DONATE HERE.