KINGSPORT, TN -- The Castle family’s goals are simple: raise awareness about mitochondrial disease, move forward, and live.
They count their blessings and thank God for all that they have, especially Cooper. “Cooper is here because of the hand of the Lord,” Chris Castle said about his 6-year-old son.
Cooper coded when he was 12 hours old, starting this Fall Branch, TN, family’s mitochondrial disease odyssey.
BALTIMORE, MD —Charlie Bainbridge is a real daredevil. The Catonsville, MD, boy who is battling mitochondrial disease is the inspiration behind “Charlie B's Daredevils,” a team of 22 walkers who will return for the fifth consecutive year to walk in MitoAction’s Energy Walk and 5K in South Boston, MA, alongside other families and patients affected by mitochondrial disease.
Stephanie Deady is a little apprehensive about attending her first MitoAction Energy Walk & 5K. It’s been a whirlwind year since her son, Logan, was diagnosed with mitochondrial disease and she still hasn’t processed it all.
“Being around so many people with similar issues makes it so real,” said the North Providence, RI, mom.
“I wake up and I just do it. I just move forward, because I have to. When I stop and think about it, the tears will come. I want to meet other people, but I don’t want to cry.”
DERRY, NH –Amy and Jason Marquis’ daughter was given a death sentence. Riley, also known as Little Miss Roo, has Leigh’s Disease, one of the most devastating forms of mitochondrial disease.
Every year, Rita Cerruti makes more than 300 mitochondrial disease awareness ribbons to hand out at the MitoAction Energy Walk & 5K. And every year, they are gone in minutes!
It’s just one way Rita, 82, a lifelong crafter, raises awareness about the disease that affects her daughter, Lisa, team captain of LC’s MitoBusters. “Making these things is my way to raise awareness,” Rita said.
It’s DisneyLand. Plain and simple. For 11-year-old Jade Stratton, Camp Korey is her idea of DisneyLand.
“That’s how much she loves it,” said her mom, Jennifer. “It brings out a part of her where she’s sparkling and happy and joyful after camp. It’s incredible.”
For one week every summer, Gwenn Peterson is just a typical kid. She goes to camp, where she meets her friends and does her own thing.
“That’s worth gold,” her mom, Lara, said.
Gwenn, 15, has a clinical diagnosis of mitochondrial disease. She has GI, energy, muscle, and neuro-psych issues. She uses a wheelchair part of the time to conserve her energy. Her muscles are getting weaker. And she’s on a lot of medications.
At summer camp, Stephen Nielsen is just one of the guys … telling jokes, talking with friends, fishing, boating, and doing archery.
“Most kids just want to be seen as normal and a part of the crowd. But you don’t always get that when you have something different,” said Diane, Stephen’s mom.
Stephen’s mitochondrial disease makes him different from most – except at camp.