And besides dropping “I pity the fool” at completely inappropriate times in the first grade (sorry, Mrs. Hudson), I also learned if you have a problem, if no one else can help, maybe you should hire a crack unit of commandos operating as soldiers of fortune in the L.A. underground. If you can find them, that is.
In all seriousness, George Peppard, a.k.a. Hannibal Smith’s catchphrase is something I repeat to this day, and as I sat down to write this week’s Chive Charities grant story, it came racing back like a 1983 G-Series van.
I love it when a plan comes together.
Y’all know how Chive Charities works, right? (This is us, btw) We take your donations, big and small, and put them to work helping people in need, people who really have nowhere else to turn after insurance, other nonprofits, and local fundraisers turn them away. So...if you think about it...we’re kind of like the A-Team, but much easier to find.
Jennifer was one of those people. A badass in her own right who beat breast cancer and then immediately discovered she was pregnant with twins, Jennifer recently found herself with a problem it seemed no one could solve.
Her son Luke, one half of the miracle twins she delivered 13 years ago, has struggled with a yet-to-be-determined mitochondrial disease pretty much his whole life.
Where his twin sister grew and thrived and hit all her baby milestones, Luke lagged behind. He had difficulty feeding, couldn’t seem to focus, had a floppy neck, and, doctors discovered, an excess of fluid on his brain. They weren’t sure if it was a big deal or not, but it was enough to get the attention of a pediatric neurologist, and a geneticist after that.
Jennifer remembers the day at St. Louis Children’s Hospital well. “The specialist told me that as little as 20 years ago they didn’t even know mitochondrial disease existed because children affected didn’t usually survive infancy.” She paused, took a breath, and added, “That was a hard visit, to hold my 9 month old twins and hear that. I asked what we could do, what’s the treatment, and he said there is none.”
Life after Luke’s diagnosis was a roller coaster. There was more genetic testing, lots of medical procedures and therapies, and learning to live life differently than before.
Patients with mitochondrial diseases often exhibit poor growth, muscle weakness, gastrointestinal disorders, and neurological issues, and Luke was no exception. He never developed the motor coordination for most personal tasks like bathing and dressing, though he eats everything his family eats and does it all on his own.
He can’t walk on his own – though he can take steps holding his parents’ hands – so Luke gets around the house by crawling on his knees, and can pull himself to a standing position in some places. He uses a wheelchair outside, when he goes to school or his siblings’ games or just out for fun with his family. Jennifer hopes one day he’ll do all those things independently, but for now, Luke’s family is by his side.
“We continue to search for answers and love him and include him and make life ‘normal,’ not just for Luke, but for his big brother Nick and twin Sarah as well. It’s not always easy and sometimes we have to do things a little differently,” Jennifer said.
Looks like they’ve got the sibling thing down.
When I talk to new grant recipients, I always ask questions that will help us get to know them better – favorite food, books, movies, music, etc. Sometimes it’s harder to pin down specific likes, especially with kids who are nonverbal, but when I asked Jennifer about Luke’s personality, she didn’t hesitate for a second.
“He loooooooves music. Sarah plays the ukulele and he scoots over to her real close, sits and watches, taps his hand on his leg, he just loves the beat,” she said smiling. “Oh! This is a cool story! He loves that song ‘Home’ by Phillip Phillips. Just loves it. So my husband’s family is from Albany, Georgia, which is where Phillip Phillips is from. Long story short, Phillip ended up talking on the phone to Luke one day, and it just made his whole face light up. Really nice guy.”
Let’s take a moment to review the lyrics to “Home.”
Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
'Cause I’m going to make this place your home
When I read that, you guys, I stopped cold. It sounded exactly like Jennifer’s promise to Luke as they navigate their new normal, and it sounded exactly like Chive Charities’ promise to the underdogs who feel like no one will help them.
I love it when a plan comes together.
A few months ago, after spinning her wheels trying to get a wheelchair-accessible van, Jennifer turned to Chive Charities.
“We’ve always just lifted Luke in and out of the car and jammed the wheelchair in the trunk,” she explained. “But he’s 13 now and growing more and more every day. We’ve reached the point I can no longer lift or carry him safely. A wheelchair-accessible van would be a total game-changer for our family. It wouldn’t make our life 10% happier, it would make it 110% happier!”
Of course we were sold – we love it when a plan comes together! Chive Charities provided Luke and his family a $54,000 grant for a wheelchair-accessible Dodge Caravan and a ramp to help him get in and out of his home with ease. The van was delivered last week and the first place they went was the Friday night football game; the home team won.
Chive Charities is looking for a few new members of the A-Team, ready to help those who feel they have nowhere else to turn. Can we count you in? Click HERE to join the most charitable unit of commandos in the world.
**Shout out to the team at BraunAbility for their help making this dream come true!