When Charley Seckler was 3 years old, everyone seemed to notice his big, strong calves. “People always said, ‘Charley, you’re gonna be a soccer player,’ ” his mom, Tracy Seckler, tells PEOPLE.
But when Charley’s pediatrician said he might have muscular dystrophy, Tracy began to connect the dots. The concerned mother went online and saw videos of other kids who had her son’s same big calves, and they were all using their hands to push themselves off the floor – just like her son did. She knew instantly that Charley had Duchenne muscular dystrophy (DMD).
Duchenne is a rare, progressive, degenerative disease affecting about 1 in 3,500 boys, according to the Muscular Dystrophy Association (MDA). Children with the condition are born without the protein, dystrophin, which results in muscle degeneration. Eventually, they can’t walk, feed themselves or breathe on their own. One of the symptoms is enlarged calf muscles because the muscle tissue is abnormal and may contain scar tissue, according to the MDA. Until recently, boys with DMD usually didn’t survive beyond their teen years. Life expectancy is increasing and survival into the early 30s is becoming more common.
At the time Charley was diagnosed, Tracy — who was pregnant with Charley’s sister, Maisy, and also mom to Charley’s 5-year-old brother, Sam — quit her job as a middle school teacher so she could take Charley to doctor appointments in Boston, New York and Washington, D.C.
“We thought for sure we’d find someone who could help him,” says Tracy, 47, of Alford, Massachusetts. “You just don’t want to hear: ‘There’s nothing we can do.’ ”
But all doctors could do was prescribe her son steroids. There was no treatment. There was no cure.
Tracy and her husband, radiologist Dr. Benjy Seckler, were determined to change that. Four months after Charley’s diagnosis, they created Charley’s Fund to try to save their son.