All newborn babies will be screen for Spinal Muscular Atrophy in Alberta, beginning with a pilot project in early 2022 (Photo: dreamstime.com)

By Shane Clausing

mandatory screening for SMA

Alberta to screen all newborn babies for Spinal Muscular Atrophy starting in 2022

Jul 21, 2021 | 1:42 PM

Starting in early 2022 Alberta will begin a pilot project to screen all newborn babies for Spinal Muscular Atrophy.

Spinal Muscular Atrophy (SMA) is a rare neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting. The disease makes it difficult for children to grow muscle as they get older.

Alberta will become just the second province in Canada to screen all newborns for SMA, so potential patients can be treated earlier and more effectively.

Bryarly Parker is the mother of Fairview’s Mighty Max Sych who was diagnosed with SMA at 22 months old in late 2020. The family learned of Max’s diagnosis late and had to scramble to fundraise $2 million in order to purchase the SMA drug treatment called Zolgensma from the United States, as it had not been approved for use in Canada at the time.

Zolgensma was eventually approved for use in Canada back in December 2020, and was given to Mighty Max in March. The one-time treatment was funded by the province.

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Parker tells EverythingGP that Wednesday’s announcement means a lot because parents likely won’t have to go through the same stress as they did last year.

“The pilot project is going to be huge. I know initially when we first got the diagnosis it was shocking to us that there wasn’t newborn screening for this,” said Parker.

“At the time Max was born, there wasn’t any treatment available. With the newborn screening process, there are now two publicly funded treatments for kids with SMA and it has shown time and time again that the sooner this disease is caught, the (better) difference that (treatments) make.”

She added it was emotional hearing the announcement of the pilot project.

“I had cried tears of joy. It’s just such a relief that no other parent (in Alberta) has to go through what we went through and the pain of not knowing what our child had.”

Muscular Dystrophy Canada is providing $366,000 to the Alberta Precision Laboratories for the pilot project. The test will be added to Alberta’s Newborn Metabolic Screening Program, which currently screens newborns for 21 conditions.

While advocating to get SMA treatment for Mighty Max from the province, Parker says her family also advocated to get a project like this started in Alberta.

“We talked about it a lot through our social media and talked with a couple of people in government. We were asked to be on a panel to discuss what this looks like going forward,” explained Parker.

“(Health) Minister (Tyler) Shandro did say that it is probably going to be something that will be publicly funded going forward, but the panel is just to make sure that happens and that it’s not just the one-year pilot project and it’s publicly funded by the province.”

Minister Shandro says this is a great day for Alberta.

“Alberta’s government is committed – and I am personally committed – to doing everything we can for kids with this devastating disease,” he said in a news release.

“Expanding our screening program means specialists can identify it sooner and treat it sooner, and hopefully give more kids a chance at a full, healthy life.”

Since receiving his Zolgensma treatment, Parker says Mighty Max is continuing to make strides every day.

She says he’s talking more and more each day and is also getting stronger as he continues his physiotherapy.