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‘It’s a horrible disease’: Perth family advocates for awareness of spinal muscular atrophy

By: Yona Harvey, Local Journalism Initiative Reporter

Mason Stewart’s dad, Eddie, describes his 11-year-old son as someone who “rolls with the punches”, a wonderful, smart boy, with a “never-give-up attitude”. Mason hunts, fishes, plays baseball and hockey, wrestles with his brother Casey and spends a lot of time outdoors.

Other than Mason’s distinctive gait, one would never suspect he had been dealing with a rare disease, spinal muscular atrophy (SMA) all his life, with spinal injections of Spinraza every four months at $125,000 a shot.

“It’s difficult to watch,” said Angie Webster, Mason’s grandmother. “It’s a horrific disease. I’ve seen it affect many families over the years.”

According to the Cure SMA website, SMA is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.

It is a relatively common “rare disorder”: approximately 1 in 6,000 babies born are affected, and about 1 in 40 people are genetic carriers, the website stated. There is no cure.  

“It was the way he carried himself when he was learning to walk, the way he used his hands (to get up), and he had a weird gait,” Eddie explained, that clued them into his condition. It took doctors a long time to get the right diagnosis.

Eddie, a truck driver, lives near Perth together with his wife, Jenna Stewart, a veterinary assistant. The couple struggled for years to get the cost of the drug covered, first through their insurance company, and later, through OHIP.

Mason requires testing every six months to make sure the injections are working. The two-hour Hammersmith test assesses Mason’s progression by “walking for six minutes, going up and down the stairs and lifting his arms”, among other things, according to Eddie.

“Every time he gets the test his score improves. If he stops the drug, then the progression of his disease will get worse and he will probably end up in a wheelchair for the rest of his life,” Eddie said. 

Webster choked up when asked what advice she would give to someone undergoing the same journey. “I think most importantly, patience.  Patience to learn, understanding, faith with each other and the system.” 

Most of all, she is advocating for new policy and procedures to make treatments easier and an awareness that this is a disease that affects children all over the world. 

“There’s a lot more work to be done,” Webster said. 

For more information, visit https://curesma.ca and https://www.raredisorders.ca/

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