GRAND RAPIDS, Mich. (WOOD) — Kyle Friar is a goal-oriented teenager.
The 16-year-old had an interview for what would be his first job a week ago. He has plans to graduate from Forest Hills Central and pursue business in college. He wants to move out of his parents’ house and eventually become a successful young adult.
All that is made harder by the disorder he lives with: Duchenne muscular dystrophy.
“I like to explain what I have sometimes, depends on like what the mood of the conversation is. If it’s serious or not,” Kyle said.
The Muscular Dystrophy Association explains DMD is a rare genetic disorder that affects the muscles, weakening them over time. It begins around ages 2 or 3, and is more common in boys.
“It sucks. I mean, it’s not pleasant,” Mike Friar, Kyle’s dad said.
Mike Friar and his wife DeAnne Friar have been battling this disorder for two decades, ever since they first learned their late son Kevin Friar had the disorder.
“When Kevin was diagnosed about 3.5, well, closer to 4, when he was diagnosed with Duchenne, I was really tired,” DeAnne Friar said. “I mean, it was a horrible thing that it happened when we had this diagnosis, but I could not figure out why I was so tired and, fast forward a few months, I was pregnant with Kyle at the time and didn’t know it.”
The Friars had Kyle tested after he was born and learned he too would live with Duchenne.
Kevin died three years ago. He was 18.
“If we could punch God in the mouth, we probably would, you know kind of facetiously stating that,” Mike Friar said about his sons living with DMD. “It’s, it was very, very challenging. I mean, we, no one gets out of here alive. So, you know, we’re pretty faith-oriented family and, you know, it’s out of our control other than what’s in front of us.”
According to the MDA, kids with DMD used to have a life expectancy of not much beyond the teen years. Now, it’s becoming more common for people with DMD to live into their early 30s, as life expectancy increases because of advances in cardiac and respiratory care.
“Now there is a need for an adult Duchenne clinic, which they’ve never needed before,” DeAnne Friar said. “That’s a good thing, now that they’re needing to treat adults with Duchenne, that’s a good problem to have.”
There are no bad problems in the Friar household. They live with what’s in front of them, day by day. As the three of them say, the brighter side of things is where they typically live. And it’s that mentality that has led Kyle to constantly try new things; rock climbing, ziplining, skiing and, more recently, power (wheelchair) soccer through Mary Free Bed Rehabilitation Hospital’s Wheelchair & Adaptive Sports program.
“The competitiveness of a sport is sometimes hard to find when you’re in a wheelchair,” his mother said. “Mary Free Bed offers some sports where you can get some serious competition, and it’s phenomenal to watch knowing his personality and spirit.”
Kyle is as competitive as he is goal-driven, and he scores enough goals in power soccer to drive that competitiveness even higher.
“Kyle would come home after practice and he’d get on the computer and start looking at strategies and rules, and this is how I can get better and these are some, some drills that I can do,” DeAnne Friar said. “It wasn’t just going out on the court and playing, it was really looking at the game and how to be the best player that he can be.”
Not just for him either. This sport has fueled his top goal in life, to be an ambassador for kids with Duchenne. To show there is life to live, there are brighter days.
“When people at power soccer aren’t quite as good, I love helping them out,” Kyle said. “And just being nice to them just feels, makes me feel good too.”