A Scary Diagnosis at 4 Years Old to Thriving 40 Years Later: Scott’s Story

Scott, 46, executive director and co-founder of Incight in Portland, Oregon, is making an incredible impact on his community. But things didn’t always look so bright.

When he was 4 years old, Scott’s family noticed that he was having some trouble getting up from the ground, and his walk started to look different. Shortly after, he was diagnosed with muscular dystrophy. Scott’s grandfather, who was a Shriner, encouraged Scott’s mother to take him to Shriners Children’s Portland, which specializes in treating children with orthopedic and neuromuscular conditions.

“In hindsight, it was by far the best decision we could have made,” Scott said.

It was there at the Shriners Children’s multidisciplinary clinic that he met Michael Sussman, M.D., as well as other specialists. After many tests and a muscle biopsy, Scott’s diagnosis was honed to the more specific and rare Duchenne muscular dystrophy (DMD). Predominantly affecting boys, it is characterized by the onset of muscle weakness that continuously progresses. The diagnosis is now made with a single blood test.

“Most individuals with DMD have trouble walking by age 4 or 5, and stop walking altogether by age 11 or 12,” Dr. Sussman said. “Scott was on the expected progression.”

By the time he was in fourth grade, Scott had tried a variety of custom-made braces produced by the Pediatric Orthotic and Prosthetic Services team at Shriners Children’s Portland. While they did help him physically, Scott was still having trouble walking and keeping up with his peers, and the braces made him feel self-conscious.

“My mom had to pull me back from the ledge and say that we were going to keep living life and moving forward no matter what,” Scott said. “My life completely changed after getting my first powered scooter and manual wheelchair in the fifth grade. Many of the frustrations, struggles and pains I had faced faded into the background, and my social life also really took off.”