Boy living with Mitochondrial disease prepares for first-ever benefit walk
LEE COUNTY, Fla.- This weekend, you have a chance to participate in the first-ever walk to benefit Mitochondrial disease in Southwest Florida.
Imagine a disease that takes so much of your energy, you fall asleep doing the simplest every day activities. That’s what life is like for 8-year-old Gavin Lawrey from Cape Coral.
His mom Brandi says, “he will literally fall asleep trying to just go to the restroom because it exhausts him, in school he falls asleep because just thinking exhausts him. So the things we don’t even think about doing, exhaust him.”
“Sometimes when I get home I need morphine, it helps with my pain. It hurts, I have pain, I have seizures and I need my button to take medicine and have food sometimes and I need oxygen to help me breathe sometimes,” said the 8-year-old.
Gavin’s form of Mitochondrial disease not only leaves him with little energy, he also suffers from seizures and other side effects impacting every aspect of his life.
Brandi says, “Gavin is in hospice now and that was a really difficult transition to make. When that happened, it was like you were hit in the face with it. Now every day I live in the reality of heartbroken for the life my son has to venture, and how difficult it is.”
But despite that difficulty, this family sees a silver lining in every step of their journey, like their huge support system.
Gavin’s big sister Makenzie looks out for her brother above and beyond the average 11-year-old, for fear of losing him. She says, “it feels good because I’m helping him so he doesn’t just have to have my mom and my dad helping him, he can have his big sister helping him too.”
Gavin also has a special assistant at Gulf Elementary School, Sherri Buckley. Buckley calls Gavin her buddy, and says he loves to give her pop quizzes about super heroes.
“With Gavin, I’ll read things to him that way he can conserve his energy. He does a lot of the writing too on his better days and then if he wants to take a break, he’ll pass me the pencil and take a break,” said Buckley.
Even Gavin’s seizure alert dog Hershey is a beloved part of the family.
Brandi says one of the hardest parts of all this is watching her son unable to do things he used to do. She says she shares their family’s story so people can put a face with the disease so many don’t know much about.
“My vision kind of changed when I realized if I didn’t allow the world to see what Mito is and what Mito looks like, they would never learn about it, they would never support it and they would never raise the funds to get us beyond this point because we really, we really need a cure for this.”
You can help find a cure by donating or participating in this weekend’s first Southwest Florida Energy for Life Walkathon at Estero Recreation Center to benefit Mitochondrial Disease research.
To learn more, visit Energy for Life Walkathon.