TOWN OF MANLIUS – The family of a Fayetteville-Manlius elementary schooler with muscular dystrophy is hoping for the community’s support in gifting their young one a home elevator.
Diagnosed at three and a half with Duchenne muscular dystrophy—a progressive genetic disorder without a cure—Enders Road first grader Charlie Prior nonetheless remains a sociable, happy six-year-old with a love of learning according to his parents, Charles and Cheryl.
“He’s got the sweetest little personality,” said Charlie’s grandmother, Sharon Forbes. “He’s always smiling and most of the time he’s in a good mood.”
Though Charlie can walk and run on his own, he tires on the playground more easily and has to take breaks sooner than most kids his age. His balance, speed, postural control and core strength are among the aspects affected by his condition.
At school he has an aide by his side who carries his book bag and prevents anyone from bumping into him too hard. The Fayetteville-Manlius School District also accommodates him with speech, occupational and physical therapy.
When faced with his multi-systemic disease, the body is incapable of producing dystrophin, a protein that pushes the muscles to properly function and repair themselves.
“It’s just a tough road for anybody that has this in their lives,” Forbes said. “As his grandma, I just want him to have the best life he possibly can.”
Since learning of Charlie’s diagnosis about four months after purchasing and settling into their colonial-style home, the family has had to assist him up the stairs before bed every night one step at a time.
Whenever Charlie ascends or descends a staircase, however, it ends up being taxing to the point that his muscle cells break down more rapidly as a result.
To preserve Charlie’s muscle function and his fullest quality of life, his parents decided a time-saving and less worrisome route would be to spring for an in-house elevator that opens to his bedroom, the first floor and the walk-out basement.
Had they known beforehand what awaited them as homebuyers, the Priors likely would have tried to find a one-story residence according to Cheryl, but she said they’ve become too accustomed with what they’ve done with the place, while their gratitude for the school district and their neighbors has grown too large to move now.
Knowing Charlie will one day need a wheelchair, a stairlift would’ve only been a temporary fix on top of that, said Forbes, who occupies an in-law suite attached to the Manlius house.
Until the end of September, which is known as the awareness month for Duchenne, the family is wishing to take in one final push of donations for the elevator as part of a fundraiser hosted by Ohio-based nonprofit My DMD Hero.
The family said that any contributions toward covering the expense of the lift would be cherished, no matter how little. Currently they’re shooting for a goal of $65,000.
“We really appreciate anything anyone’s willing to do to help take the burden off financially,” Cheryl said. “We’re determined to make this happen for Charlie.”
Speaking on the current fundraising progress and past efforts, Cheryl referred to the supportiveness of the community as “fantastic.”
In 2019, a private Facebook group called “Charlie’s Muscle” was created as a way to rally for its namesake. The Bottle & Can Retrieval Center on West Seneca Street later set up an account for the cause, with funds going to adaptive equipment for Charlie and other fundraising endeavors related to Duchenne.
Through the summer and fall of 2021, Dimon Construction, Manlius Fire and EMS and the Town of Manlius Police Benevolent Association built a full ramp leading from the Prior house’s back deck free of charge to allow for safer egress.
This past June family members on his father Charles’ side organized with the Mary Angelica Prior Fund to put on a charity golf tournament in Watertown, and an aunt hosts an annual rummage sale elsewhere in the North Country to benefit Charlie’s Muscle.
Established in September 2019, My DMD Hero has offered a boost to families looking to buy removable ramps, Obi robotic self-feeders, therapy pools, foldable wheelchairs and transitional scooters. The organization has a review team that evaluates the needs of families and the urgency of their situations.
“There are so many things a family with Duchenne needs that aren’t covered by insurance, so it leaves families to get creative,” said Chris Andrews, the founder and president of My DMD Hero. “We’ve found that if we can just come alongside and give them some guidance in the fundraising that it’s a huge blessing to them.”
Even with mobility difficulties caused by Duchenne, Charlie enjoys swimming at the YMCA, riding around in his toy jeep and playing for his Syracuse Challenger Baseball squad. He also takes part in adaptive sailing and skiing and cheers on his older brother, Noah, during his martial arts classes and competitions.
Cheryl and her mother, Sharon, are also connect coordinators for Parent Project Muscular Dystrophy in the Central New York region. They have told Charlie’s story at congressional offices in Washington, D.C., urging the federal government to advance efforts to find a cure for Duchenne.
Primarily affecting males, Duchenne is the most commonly found muscular dystrophy in children, with about 20,000 babies born with it every year.
Donations to the family’s fundraiser can be made through the Facebook page titled “Help Charlie Get His Elevator!” Checks with the memo “Charlie Prior” can be mailed to My DMD Hero at 4797 Funston Court, Columbus, Ohio 43232.
