I have read several stories about 13 year-old Damon Woods of San Diego, California and his need for the continuation of the clinical trial called ‘drisapersen.’ Damon has a rare disorder called Duchenne Muscular Dystrophy, characterized by the loss of muscle to the point of not being able to care for oneself, hospitalization and early death, mostly by early 20s. Duchenne only affects boys.
For Damon, the disease progressed more slowly than most who have it. By age 8, he was diagnosed with Duchenne MD after one year of testing. Damon was a normal boy who loved playing with his sister Kaylen, 11 and 3-year-old Laiden. And now, he is in a wheelchair.
A mother of three, Charmaine Woods has managed to find strength through faith to care for her children and Damon with special needs now. Damon receives drisapersen injections which is an investigational treatment to slow the progression of Duchenne. Her son, Damon, responded well to the treatment but it is in the hands of the FDA to approve or not approve this clinical trial.
Debra Miller is president and ceo of CureDuchenne.org and supporter of the clinical trial drisapersen.
Drisapersen is administered by injection and is very painful. Damon said during our interview, “the benefits out weigh the pain.”
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