F-M student Charlie Prior doesn’t let his diagnosis slow him down. Charlie, a third grader at Enders Road, was diagnosed with Duchenne muscular dystrophy at the age of 3. Duchenne is the most common muscular dystrophy in children, and mostly affects boys. It is a progressive disorder that causes muscles to become weaker over time until it affects the whole body.
Thanks to a new gene therapy drug, Charlie’s mom Cheryl said she’s seen improvements in his mobility, independence and self-confidence. She called the improvements a miracle, and said he’s happier, an active participant in the classroom, and is spending more time with his friends. She said raising awareness for Duchenne and sharing Charlie’s story is key.
“Yes our son has a progressive rare disease and there is no cure, that’s true,” Cheryl said. “But we are okay. We are living a full life of love and special moments and experiences. No one can do this alone. We advocate, share our story and do everything we can to help Duchenne families the same way Duchenne families have helped us all along.”
One of those special moments for Charlie was being invited to Syracuse University to be an ambassador during the team’s Sept. 28th game against Holy Cross. Parent Project Muscular Dystrophy, an organization that offers information and resources about DMD, hosts “Coach to Cure MD” each fall, in a partnership with the American Football Coaches Association. It’s the largest national charity devoted exclusively to Duchenne. College football coaches nationwide wear patches on their sleeves on the last Saturday of September in an effort to raise awareness and raise money to fund research for a cure.
This year, Charlie and his family met SU head coach Fran Brown, along with Brown’s wife and kids. Charlie was also invited onto the field, where he was able to meet and cheer on players. The Priors watched the game from seats at the 10-yard line, raising awareness along the way by sporting their Coach to Cure MD shirts. It’s a memory Cheryl said they will have forever.
