Exercise is a key difference maker for patients with SMA and works hand in hand with other medical advancements.
As a child, Mitchell Choma rarely sat still. Passionate about sports, he especially loved playing football and hockey in his hometown of Burlington, Ont. Then, at 15, his future was put in doubt when he was diagnosed with a rare disease and faced with the prospect of losing his ability to walk, let alone play sports. Now 23, Mitchell’s optimism is renewed due to his determination and recent care advancements.
In April 2017, Mitchell was diagnosed with spinal muscular atrophy (SMA), a rare, genetic neuromuscular disease that can affect individuals of any age. In its most severe forms, it can lead to early death or the inability to achieve key developmental milestones. In its less-severe forms, patients experience progressive loss of muscle and motor function and deteriorating quality of life.
At the time of Mitchell’s diagnosis there was no treatment available, and he was confronted with questions about an uncertain future. “I was in a dark spot in my life, trying to figure out, ‘What do I do now?’” he said. “Now the things I loved doing for my whole life were stripped away.”
Before the diagnosis, no one in Mitchell’s family had even heard of SMA and they didn’t know which way to turn. “The diagnosis was devastating. We felt that ache as parents. That was a day none of us forgets,” says Mitchell’s dad, Peter.
Reason for hope
About a year after Mitchell’s diagnosis, a glimmer of hope arose as he and his family became aware of new developments in SMA research and care. Although cautiously optimistic about how – or if – they could help, in 2018 he and his family worked with his neurologist to access the new care approaches that were available.
The impact on Mitchell’s life was profound. As his confidence in his abilities grew, he felt inspired to become more physically active again, and today he exercises every day.
“My activity level went up exponentially. It’s driven me to do bigger and better things than I thought possible,” he said. “When I see physical improvements, that brings me joy because that’s something I didn’t think would be possible when I was diagnosed.”
Mitchell pictured playing golf – his fitness routine today includes daily exercise
When I see physical improvements, that brings me joy because that’s something I didn’t think would be possible when I was diagnosed.
Positive effects of physical activity
Melissa Dermody, a physiotherapist in the Adult SMA Clinic at Sunnybrook Health Sciences Centre, says that for people with SMA, physical activity is vitally important for maintaining strength.
“There is increased importance for people with SMA to be active in order to prevent disuse muscle atrophy, which occurs in addition to the atrophy associated with SMA,” she says. “For people on a disease-modifying therapy, you have an enhanced opportunity to maximize the benefits of treatment through physical activity,” Dermody says, adding that she is seeing this in her patients.
“Patients are reporting functional gains while on disease-modifying therapy that are not always captured on the physical function tests, but are relevant and important for quality of life,” she says. “People are reporting the capability to go to more social events outside the home and participate longer in work or education. It is very exciting to see.”
Melissa Dermody
Physiotherapist, Adult SMA Clinic,
Sunnybrook Health Sciences Centre
Sharing his story to help others
Today Mitchell looks to a bright future, having graduated from Brock University with a degree in sport management and recently starting his first job. Peter remembers when the outlook was much less optimistic for his son. “Things looked very different for us when he was diagnosed,” he says. “We were counting the days when he would have to use a wheelchair. Today the goal is to push that out as far as he possibly can.”
Mitchell’s journey transformed him into an advocate as he raises funds for, and awareness about, SMA. His Instagram account, SMA Warrior Fitness, is a platform where Mitchell shares his message about the importance of self-care and active living to others in the community.
“If sharing my story helps even one person, that is something I can hold dear to my heart, because the SMA community has done so much for me,” Mitchell says. “I am so grateful for where I am now, and I want to help others as much as I can.”
If you or your child are experiencing any suspected signs or symptoms of SMA or would like to know more about SMA and its available treatment options,
please consult a healthcare professional.
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