Billy Ellsworth, 15, of Kennedy Township, waits for numbing cream to take effect on his hands before receiving an experimental drug to treat his Duchenne Muscular Dystrophy,
a rare genetic disorder that starves muscles of needed protein and confines most of its sufferers to wheelchairs by the time they reach their teenage years,
at Children's Hospital of Pittsburgh of UPMC in Lawrenceville on June 22, 2016. He is enrolled in a clinical trial for the drug Eteplirsen, which his mother, Terri, credits with his relatively good condition compared to others his age with the same diagnosis. An FDA advisory committee voted not to approve the drug, and now the FDA is considering whether or not to grant the drug accelerated approval status.
Dr. Hoda Zakaria Abdel-Hamid examines Billy before receiving an experimental drug treatment at Children's Hospital of Pittsburgh of UPMC.
Billy walks out of the hospital after his treatment.
Billy eats his breakfast before heading to camp, as his father, Bill, stands in the kitchen of their Kennedy Township home on June 23, 2016.
Bill Ellsworth of Kennedy Township pushes his son, Billy, into the YMCA's Camp AIM at Carlynton Junior/Senior High School in Carnegie on June 23, 2016. Camp AIM is a summer program for young people with physical and cognitive challenges.
Billy sits in his wheelchair at the YMCA's Camp AIM.
Billy sits with camp counselors Ben Retcofsky, 18, of Oakwood, left, and Ryan Dodson, 20, of Bethel Park, center, as they play cards at the camp.
Billy talks with camp counselors Ben Retcofsky, 18, of Oakwood, at the camp.
Ben Retcofsky, 18, of Oakwood, pushes Billy at the camp.
After much coaxing, Billy takes his turn at batting at the camp.
Billy sits in his chair at camp as the day comes to an end.
Terri Ellsworth of Kennedy Township picks up her son, Billy, from camp. To read more about Billy and the drug trial visit