Despite being born with Spinal Muscular Atrophy, Matthew Lohmeyer’s journey is one of resilience. The progressive nature of this genetic disorder leaves people struggling with basic life functions, but a breakthrough drug has given Lohmeyer a new chance at life.

Lohmeyer, 35, is one of three siblings born with SMA, a neuromuscular disease that affects about one in 10,000 babies, but he’s never let it define his life. 

“Growing up, I had plenty of friends,” he said. “My friends would hold onto the back of my wheelchair while they rode their skateboard. We had a ramp in front of our house and it was not uncommon for me to borrow one of my friends’ skateboards, sit on it, ride it down the ramp and crash into a tree.”

As the disease progressed, Lohmeyer found himself physically limited, but his mind couldn’t be weakened. He attended the Academy For Math, Engineering and Science, graduating with the first class who had attended all four years at the charter school in Murray. 

He considered going into psychology, enjoyed statistics and even wrote to the late Utah Sen. Orrin Hatch asking why he couldn’t serve in the military, just because he was in a wheelchair. (Hatch responded that Lohmeyer wouldn’t be able to get through basic training, which is a requirement for any military job).

Lohmeyer earned his associate’s degree from Salt Lake Community College and a bachelor’s from Weber State University. He currently works as an IT program analyst at the University of Utah. His resiliency can be traced back to his family who refused to let him use SMA as an excuse.

“They’d tell me just because you’re in a wheelchair doesn’t mean you should be treated any differently. Don’t expect special treatment. As my grandfather used to say, ‘Life’s tough. Get a helmet.’”

Lohmeyer met his wife, Arielle, through an online dating platform. She loved his sense of humor and he enjoyed making her laugh. They had several long conversations before they met for their first in-person date in September 2021. Soon after, he started taking the first at-home treatment for SMA, a drug called Evrysdi.

The Riverton resident didn’t have huge expectations for the drug but felt any amount of improvement would be a win. He also wanted his experience to further research into SMA treatments. The changes were gradual but he soon noticed more strength.

“It feels like Evrysdi has prevented the disease from progressing,” he said. “I feel like I’m physically as I was almost two years ago. If not slightly better.”

Lohmeyer married Arielle in October 2022 and went off the medication so they could go through the IVF process. Off the drug, he noticed a rapid loss of strength. But once he started up again, his abilities returned. 

He and his wife welcomed their daughter Nicole three months ago and Lohmeyer’s greatest joy is being able to change her diaper. It’s a time to bond with her and share his love for video game music. 

“I look forward to that because it’s just me and her,” he said. “I can talk with her. I can tease her. On day one of being home with her, and figuring out how to change her diaper for the first time, I pulled out my phone and turned on the soundtrack to Final Fantasy IX.”

Genentech, the makers of Evrysdi, recently released results from a five-year study that showed marked improvements in children born with SMA, including the ability to swallow, eat without a feeding tube and sit without support for more than 30 seconds. 

Lohmeyer is happy to be a guinea pig in the research. His next challenge is getting a vehicle outfitted with hand controls so he can get his driver’s license. Something he never thought he’d be able to do. 

“It’s hard for me to say where things would be in my life right now if I didn’t have [Evrysdi] because I saw how my body has degraded over the years,” he said. “Now, it’s basically plateaued, if not increased a little bit in ability. I can’t think where I would be without it.”λ