Three-year-old Paxton is the tiny, grinning powerhouse that keeps his grandpa, Stuart Horton, going. His smile gets Stuart out of bed every morning and, even though it’s tough for the 53-year-old with Charcot-Marie-Tooth disease to travel, it’s his grandson’s future that motivates Stuart to participate in MDA Muscle Walk this year.
“It’s the simple things in life that are such a problem for me. I don’t want them to have to worry about showering and falling,” he says of his grandson and daughter, Samantha. “I want them to be able to not have complications. I’d rather them be free of everything I’ve had to deal with.”
Diagnosed with CMT at 26 years old, the former cabinet maker and graphic designer has trouble with recurring numbness in his right arm. He has difficulty controlling his hands and weakness in his legs. The discs in his spine and neck have deteriorated, leaving him in pain, and he’s taken some bad falls, which have forced him back into using a wheelchair.
His daughter is 26 years old — the same age Stuart was when he found out he had CMT. She, too, lives with CMT and has challenges with muscle weakness. Paxton will need to be checked soon too.
Stuart wants a cure, but not necessarily to help himself. He wants a cure for the next generation. He wants it for his family.
“I am hopeful that they find something for the youth and the younger generation — a promise that they will have a better life, a better future and fewer complications,” he says.
That’s why Stuart makes the effort to be a part of Muscle Walk, even though getting out of the house is tough for him. He says no one should have to go through what he has, especially the kids.
“It’s for a good cause,” he says of the walk. “MDA helped me a lot since I was diagnosed, so I’ve figured at least I could give back in that way.”
Stuart sees Dr. Robert Pascuzzi, a neurologist affiliated with the MDA Care Center at Indiana University Hospital in Indianapolis. Dr. Pascuzzi has been good to him, he says, and helps him manage his pain, so he can live as comfortably as possible.
“Any time I’ve had a problem, he’s helped me and the MDA has helped me,” Stuart says, explaining that the MDA helps him get the injections in his spine and neck that he needs to control the pain and has assisted him with getting new leg braces.
Stuart isn’t shy about asking for donations to MDA so others can get the help that they need, too. Stuart has been handing out fliers and posted on Facebook to fundraise for his team, Horton Clan, which will be participating at the Muscle Walk in May at White River Park in Indianapolis.
This will be Stuart’s second time participating, with his team of family and friends. The first time they attended, Paxton did crafts with his mom and went gaga over the fire truck parked at the event.
In all, it was a wonderful experience, and Stuart appreciates the fun, supportive atmosphere. It helps ease his worries about his disease and the future.
“The walk takes away a little bit from thinking about it all the time — takes your mind away for a little while at least,” he says.