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.”

This newfound confidence followed Scott all the way to college, where he had made the decision that he wanted the experience of living on campus.

“I’ll never forget that when I had narrowed it down to two colleges, two Shriners Children’s Portland therapists gave up personal time to visit potential campuses and dorm rooms to assess any changes which might need to be made so I could navigate the spaces in my wheelchair,” Scott said. “That was obviously way above and beyond the call of duty, but very much appreciated. And a good example of the bonds I formed with some of the staff at Shriners Children’s Portland.”

Scott is referring to Sally Moeggenberg, MPT, and April Trenaman, ORT/L, who are still providing amazing care to kids at Shriners Children’s Portland. “Scott saw an opportunity to help people like himself and he wanted to pursue it all the way,” April said.

He chose the University of Portland (UP). Attending and living at UP changed the trajectory of Scott’s life. He built up an incredible wealth of connections and networks as his social life fully blossomed, and he carried that straight into his next phase.

Scott co-founded and became the executive director of Incight, a 501c(3) nonprofit that has grown and expanded over the years. It now offers educational opportunities, such as a scholarship and the Transitions program, which is aimed at high school graduates. They also offer employment assistance, raise disability awareness and host annual fundraising events, such as a gala, a golf tournament and more.

Dr. Sussman is delighted to see how far Scott has come. “It’s incredible how much he’s accomplished,” he said. “He’s managed to be independent and help so many others get independent and stay independent. He is a remarkable individual, and has exceeded all expectations.”

Scott’s appreciation for the care he received at Shriners Children’s was recently on full display when he gave a moving speech about his experiences at a hospital-wide meeting at Shriners Children’s Portland.

“Each step in my journey has represented new challenges, opportunities and milestones to be achieved, and I will never forget the many incredible people at Shriners Children’s Portland that were there every step of the way,” Scott said. “I feel blessed to be able to come back and share my story.”

Former patients like Scott can keep connected to the hospital of their youth as well as connecting with other former patients by joining the Shriners Children’s Patient Alumni Network.