Spinal Muscular Atrophy: Son’s illness inspires Calgary family to help find a cure

CALGARY – Alex Starratt is a bubbly, chatty seven-year-old who loves Star Wars and sports.

“His favourite team is the Calgary Flames,” his father Mark said before Alex jumped in, adding, “… and the Roughnecks!”

The second grader enjoys playing sports too, focusing on activities he can do even though illness has made many aspects of life very difficult.

“Alex was diagnosed just before his third birthday with Spinal Muscular Atrophy,” said his mom Jennifer Hayes Starratt.

“He’s missing a gene that produces a protein and because of that he suffers from muscle weakness and muscle wasting.”

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It means Alex is unable to walk on his own and struggles with fine motor skills because of weakness in his arms. SMA is a progressive disease, meaning it could one day also impact his ability to cough or swallow. It’s also a genetic disease. After Alex was diagnosed, his parents learned they were both genetic carriers.

“Those (first) few months were very hard,” Mark said. “When we came out of what I call ‘a dark period’ we decided that we wanted to do something not only to help kids like Alex but people all over the country.”

To do that, Mark and Jennifer formed the Starratt Family Foundation, a non-profit group working to advance education and research for all kinds of neuromuscular diseases, including Muscular Dystrophy and ALS.

“A lot of these diseases have no treatments,” said Mark. “A lot of these diseases have no cures.”

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In just a few short years, the foundation has already raised tens of thousands of dollars in support of research at the University of Calgary, but the family is looking to do more. Next month, they’ll host the first “Touching a Nerve” Gala, with hopes that money raised will help make a difference for the thousands of Canadians who suffer from these incurable diseases.

“I think that when it comes to neuromuscular diseases, because we’re seeing so many things in terms of drug trials, in terms of genetic therapies, in terms of other physical therapies…we feel like we’re close.”

The “Touching a Nerve” Gala happens Saturday, Oct. 3. For more information and tickets, click here.