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Family of “Mighty Max” overwhelmed by news of possible treatment funding

The family of a two-year-old boy from Fairview desperately trying to raise millions for medical treatment says they are hopeful he will qualify for recently announced government funding. Health Minister Tyler Shandro announced Wednesday that families of Alberta children with spinal muscular atrophy may be eligible to receive coverage for gene replacement therapy treatment, including access to the drug Zolgensma, on a case-by-case basis.

In November 2020, “Mighty Max” Sych was diagnosed with spinal muscular atrophy type 2, a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles. The Peace Country and beyond has been supporting the Sych family’s efforts to raise at least $2.125 million dollars to get the treatment out-of-country, including through a GoFundMe page, bottle drives, and donut sales.

Max’s father, Bowden Sych, says they are overwhelmed with not only the news but how much love they’ve felt from residents across the province since the diagnosis. He adds the hope of getting to see his child walk is a driving force.

“I can’t stress how much people across the province and the Peace Country have come together for us, and not just for us,” he says. “We hopefully blazed a trail for other families and children in a tough situation, and the money and funding were great, but the thing that really came through was the attention and advocacy.”

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Without treatment, muscle weakness develops in infants between six and 12 months of age. Children with SMA Type 2 can sit without help, but cannot stand or walk independently. Feeding and breathing issues also develop. According to Cure SMA Canada, the disease affects roughly one in 6,000 children.

Sych says he remains at a loss for words when it comes to how far they’ve been able to come in the three months since Max was diagnosed.

“The amount that has been accomplished, fundraised, and the amount of awareness raised in three months is insane,” he says. “But I’m pretty sure everyone in the Province of Alberta is now aware of SMA, and the difficulties that come with it.”

The Sych family does not know yet whether Max’s treatment could be covered by the government.

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