Brett Way

WELLS — A progressive neuromuscular disease is estimated to affect one in 10,000 people. In Michigan, it’s estimated that more than 200,000 people are carriers of the genetic disease, including Wells Township resident Brett Way.

The disease is called spinal muscular atrophy, or SMA, and is the number one genetic cause of death for infants. SMA affects a person’s motor nerve cells in the spinal cord, which as a result takes away the ability to walk, eat or breathe, according to an SMA fact sheet from June 2021.

“SMA is caused by the deletion or mutation of the survival motor neuron gene 1. In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles,” the fact sheet states. “Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal weakness of muscles used for breathing, crawling, walking, head and neck control, and swallowing.”

Way, 34, lives with SMA in Wells Township. Growing up, he said life was pretty normal.

“I fought with my brothers and sisters, who doesn’t? I had a good group of friends, my best friend across the street, and we played hockey and all sorts of things throughout our childhood,” he said. “We did percussion together all the way through high school and they (my friends) helped me take my jacket on and off during recess.”

Way was also the manager for the basketball team when he was a child and then later the manager of the high school hockey team when he was in high school.

Things were normal, he said, until everyone started to get their driver’s license.

“I would say that’s when (we) started to drift apart. That group of friends narrowed down. A lot of times, my parents would borrow their (friends) car so they could have the van and drive me around to go to lunch and do stuff on the weekend,” Way said. “It changed in the sense of how many friends, but the quality of friends probably got better at that point.”

While there is no cure for SMA, approved treatments have been made available recently.

“Like I mentioned before, I was a percussionist all throughout high school,” he said. “I would probably have a very hard time just even holding a drumstick with my left hand now. It’s definitely weaker muscle-wise, that’s the nature of the disease.”

For about two years now, Way has been taking Evrysdi, an at-home treatment for SMA. Evrysdi is a prescription medicine used to treat SMA in children and some adults.

“My muscles in my arms, my upper extremities, they haven’t seen big gains or anything, but where I have seen improvement is in my breathing function as well as my jaw strength,” he said. “Maybe it’s because those are the things I see the most that the medicine is kind of helping those things a lot.”

Despite living with SMA, Way stays busy in his life. He works remotely at home, is the treasurer for the Wells Lions Club, trustee for Wells Township and on the board for Superior Alliance for Independent Living.

Way is also close with his family, spending time with his nieces and nephews after school and at hockey games and figure skating classes and competitions.

“It’s busy, so I hardly have time to think about the disease, truthfully,” he said.

In July 2018, the United States Secretary of Health and Human Services added SMA to the national recommended list for newborn screening, known as the Recommended Uniform Screening Panel or RUSP.

According to the fact sheet, each state determines what conditions to include in its screening panel and how to add conditions to this panel. The RUSP is an important guideline for states in this process, and after being included, several states have taken action to adopt and implement newborn screenings for SMA.

More than three-quarters of all states have implemented newborn screening for SMA, representing close to nine in every 10 babies born in the country, according to the SMA fact sheet. Michigan began screening newborns for SMA in 2020.

One thing Way wants people to know is if they see someone who has a disability, whether it be mental or physical, is that they are people, too.

“We look a little different, act a little different sometimes, depending on what the (disability) is, but just treat us normal,” he said. “There might be some things we need help with that most people don’t, but for the most part just treat them like a person and get to know them. You’ll find that a lot of people with disabilities probably have a really good sense of humor about it.”

For more information about SMA, visit curesma.org.