Most boys with Duchenne muscular dystrophy are in a wheelchair by 15 and in a casket before 30. Parents want to know then, why hasn't the US FDA approved an experimental drug that could save their sons?
A wheelchair by age 12, maybe 15 if he were one of the lucky ones. A ventilator would be next, and then would come the casket, probably before he turned 30. That was what Terri and Bill Ellsworth expected for their son when doctors confirmed his diagnosis of Duchenne muscular dystrophy, a debilitating and fatal disease striking one in 3,500 boys.
