GREENVILLE, Pa.—On Wednesday, Billy Ellsworth was in the same place he has been every Wednesday for the last five years. The 14-year-old boy from Coraopolis, Pa. was in a medical office getting an intravenous treatment for his Duchenne muscular dystrophy (MD).
On Saturday, the Montour High School ninth-grader will be a world away from those sterile and clinical offices and at midfield of Thiel College’s Alumni Stadium. Ellsworth is taking part in the opening coin flip of the football game between Thiel and Case Western Reserve at 1 p.m. as part of the Coach to Cure MD game-day charity partnership. He was diagnosed with Duchenne muscular dystrophy when he was four. Life expectancy for boys suffering from the fatal disease is the mid-20s.
“As a mom you want to turn back the hands of time,” Billy’s mother, Terri, said. “All moms feel that way, but it’s even more the case when your child has a terminal disease.”
The devastating muscle wasting disease results in progressive loss of muscular strength and function. One in every 3,500 boys has this type of muscular dystrophy. No cure or approved treatment exists. But that could be changing as Ellsworth continues to work raising awareness of the disease.
This is Ellsworth’s fourth year participating in the Coach to Cure MD game-day promotion, but his first year at Thiel College. He is strong enough to walk on the field Saturday for the coin toss because he is the only boy in Pennsylvania—and one of just 12 in the country—getting an experimental treatment for his MD. Ellsworth has been trialing the experimental drug for the past five years. The drug could be approved by the end of the year, Terri said.
“The majority of boys his age are already in wheelchairs,” Terri said. “There are boys his age who can’t use their upper bodies. This would be the first drug for MD. It is a historical thing.
”The Coach to Cure MD is a partnership between the American Football Coaches Association (AFCA) and Parent Project Muscular Dystrophy (PPMD) in which over 600 colleges and universities and 11,000 coaches across the country participate. Thiel’s coaching staff will be wearing Coach to Cure MD patches on their sleeves Saturday.
“Coach to Cure MD is a great cause that we enjoy supporting every year through the AFCA sponsorship,” said seventh-year Thiel head football coach Kurt Reiser, M.A. “This year is special because we get to host Billy for the game and allow him to experience Thiel College football and our game day atmosphere. Being a member of our football program is more than wins or losses on game day. It’s about our players growing as men and understanding the importance of giving back.”
Click here to donate to fund research or by texting the word “CURE” to 90999 on a mobile phone to give five dollars.
Also, check out the link to Billy’s Wish Fund to keep him in his home with modifications.
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