Mighty Max to recieve costly gene therapy, courtesy of the Alberta Government

FORT MCMURRAY ( 660 NEWS ) — If you live in northern Alberta, you may have heard of Mighty Max. Max Sych is a two-year-old boy from Fairview, who was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 in November of 2020. Born at just 25 weeks gestation, Max only weighed one pound and eleven ounces. He received multiple blood transfusions, respiratory therapy, and surgery before he was discharged from hospital. Once home he spent six months using an oxygen tank to help him breath, with an additional four months using oxygen at night.

His parents, Bryarly and Bowden Sych, say that Max was reaching all his development milestones, but eventually his parents noticed a decline. He wasn’t able to support himself when he stood up, and his back was arching when his family helped him walk. His parents sought out the help of the doctor’s who had previously treated their son.

Bryarly says that doctor’s initially thought Max had Cerebral Palsy — a common condition in premature babies who have brain bleeds. When Max’s MRI scans came back clear for Cerebral Palsy, his doctors began genetic testing. In November of last year his doctor’s determined that his delayed development was being caused by SMA Type 2, a rare neuromuscular disease.

After some research from his father the family determined that the best course of treatment was a drug called Zolgensma. The problem? The injection has been dubbed the most expensive drug in the world, costing almost $3 million.

The family raced to raise the money for their son’s treatment. Between auctions, bottle drives, generous donors, and other means of fundraising the family was able to raise over $1.3 million between November 2020 and February 2021. Bryarly says they also petitioned the government to fund the treatment.

“At one point we had people across the province writing letters to Tyler Shandro,” Sych says. “We were sending in hundreds of letters a day, we wrote thousands.”

Then last month Max’s family received the news they’d been waiting for, the Alberta government would be covering the cost of treatment. Bryarly says that she’s shocked that they’re going to receive government funding.

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“It kind of seemed surreal for a bit. It’s been told to me that it’s going to happen, but until he’s in that room with the IV and it’s being administered, I don’t know if I’ll actually believe that it for sure happened,” she says.

Spinal Muscular Atrophy is a disease that progressively gets worse over time, but Bryarly says they’re hopeful that Max is receiving the treatment in time to see a lot of benefits.

“The motor neurons that help people walk, swallow and breathe — some of those have already been unfortunately killed off,”  Sych explains. “But this stops the further progression of it. We’re hopeful, we’ve had medical professionals look at Max and they’re hopeful — which is really nice for us to see that he potentially could walk. That his abilities will be that much stronger. So I think that’s the biggest hope for us.”

Max was tested for antibodies last Tuesday, with the test being sent off to a testing facility in the Netherlands. The Sych family are awaiting the test results, which are only valid for two weeks, before Max can receive his treatment. As for the $1.3 million that was raised for Max’s Zolgensma, Bryarly says they’re putting it to good use.

“People can request the money they donated back,” Sych says. “But a lot of people have told us to keep their donations. So we did have a group of people up here who have started a non-profit for families so they can access equipment or any sort of funds for medication that’s not covered,” Sych adds, saying that one thing that she’s learned from this journey is that they’re are a lot of things that aren’t covered by healthcare.

The Cleveland Clinic reports that SMA affects one in every 6,000 to 10,000 babies.