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What it’s Like for one boy Living With Autism and Duchenne Muscular Dystrophy?


At the end of a long day at the Children’s Hospital of Eastern Ontario in Ottawa, the Barber family sits in a dimly lit exam room. As cartoons play on a television in the background, J.J., a 13-year-old boy with Duchenne muscular dystrophy and autism, sits on an examination table while his father, James, sits in his son’s wheelchair and his mother, Lisa, sits in a chair. It’s one of the first moments of respite the family has had after a long day. They’ve been going nonstop since 8 in the morning.

Once all the tests have been finished for the day, the Barbers sit in tired silence. J.J. parrots the TV show, and Lisa reaches over to touch her son’s foot. She slowly lifts up the leg of J.J.’s sweatpants and pretends to bite his calf. She then gently tickles him.

 

What It’s Like For One Boy Living With Autism And Duchenne Muscular Dystrophy?