Kyle McWilliams is Up to the Challenge

College Student Faces Challenges Head On 

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Kyle McWilliams, 22, Victor, Iowa, grew up an active farm kid and has never let obstacles get in his way.

His mother Margie smiles as she tells the story of his first day of college at the University of Iowa.

“His bus never showed up,” she remembers. “As I sat there calling to find him a bus, he just took off toward campus in his wheelchair. He was moving fast. I couldn’t keep up. Not long after, he texted me from class that he’d made it. That’s Kyle!”

But dashing off to class was characteristically Kyle, according to his father, Curtis.

“Kyle just never, ever gives up,” he says. “He played golf in high school, and his coaches were just in awe of him. When he lost the ability to walk over the summer, he located a handicap golf cart and had it delivered from Michigan. Problem solving at its best.”

The McWilliams have really needed that determination since Kyle was diagnosed more than two decades ago. Like so many FOP families, it was a challenge to get the right diagnosis.

“It was Christmastime. Kyle was two and playing on the floor. We noticed he wasn’t bending his left leg. We ended up having an x-ray, and it showed the shape of a screw in his left leg. We later learned it was his vaccination shot, calcified.”

The doctors first thought Kyle suffered from myositis, a muscle inflammation disorder—which is a common misdiagnosis. A couple of doctors later, they found the National Organization for Rare Diseases (NORD), which led them to Dr. Kaplan.

“I’ll never forget the day we got the call. Dr. Kaplan told us he was studying FOP and wanted to confirm Kyle’s case. That moment gave us hope. Hope is what really saved us,” Margie says tearfully.  

Dr. Kaplan has not only served as caring and knowledgeable physician for Kyle, but also introduced the family to the IFOPA, for which they are immensely grateful. 

“Through the years, we’ve met other families, even one in Iowa!” Margie says. “IFOPA events give us hope and keep us connected.”

Today, Kyle is a college senior, finishing up a degree in Sports and Recreation Management. He’s had a very positive college experience, approaching his studies with the same tenacity he brings to all other endeavors.    

“Every day is going to be a challenge, but you take on the challenge,” Kyle says.

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