Greyson Henzel is a bubbly, outgoing four-year-old who loves Hot Wheels, building forts with his sister and make-believe games. But unlike most kids his age, Greyson is also living with spinal muscular atrophy (SMA) — a rare neuromuscular disease that weakens muscles and limits movement.
Greyson was diagnosed with type 2 SMA in 2023 after his parents, Jill and Keaton, noticed he wasn’t interested in walking or standing. At just 20 months old, he became one of the last children in Manitoba not to be diagnosed at birth. Newborn screening for SMA was introduced in the province only six months after his birth.
“It was a shock for us,” said Jill. “The biggest challenge is that you always have a picture in your mind of what your kids will do or act like. We’re just trying to figure out how to be the best parents we can to a child with a physical disability. We never know what each day is going to look like.”
SMA is a progressive disease that causes motor neurons to stop responding, leading to muscle atrophy. Left untreated, it robs children of the ability to move, eat and eventually breathe. Thanks to a treatment available only in the past six years, there is hope Greyson will retain his current strength and mobility.
“Essentially, your guess is as good as ours when it comes to Greyson’s future,” said Jill. “At this point we can only hope it continues to work and there will be no impeding consequences.”
Over the past two years, Greyson has taken part in intensive therapy programs — including six weeks in Toronto and one week in Winnipeg. When he started in Toronto, he could crawl only a couple of feet. By the end, he was crawling more than 20 feet and learning to mount and dismount his wheelchair. Today, he can stand with assistance and even take a few steps.
“The Toronto program really pushed him to be mobile on his own,” said Keaton. “That’s huge for him and us as parents because we want him to be as independent as he can be. Despite his diagnosis, he doesn’t hold back from being a kid.”
The Henzels say therapy has made a tremendous difference, but it also comes with challenges. Funding limits mean Greyson is only approved for one Toronto program in his lifetime. The family hopes to receive approval for more sessions and to continue working with Children’s Therapy Collective in Winnipeg — the only clinic in Manitoba currently offering intensive SMA-specific therapy.
Rallying community support
The family will be taking part in Muscular Dystrophy Canada’s Walk and Roll event in Winnipeg on Sept. 7. The Henzels are fundraising under “Team Greyson,” with proceeds supporting research, advocacy and treatment for Canadians living with neuromuscular diseases.
“It’s because of donations like these the future is brighter for people living with spinal muscular atrophy — Greyson included,” said Jill.
Anyone wishing to donate can find the Henzels’ team page at: muscle.akaraisin.com.
For Greyson, each day is about gaining strength, pushing boundaries and embracing life as fully as he can.
“He’s just like any other kid who loves to play,” said Jill. “Overall, his outlook gets better and better each day.”
