The family Fairview's "Mighty" Max Sych is now awaiting to know if he will be eligible to receive funding for the drug, following Wednesday announcement by Health Minsiter Tyler Shandro (Photo courtesy of dreamstime.com)

By Shaun Penner

Pushing Forward

Fundraising, advocacy continues as family of “Mighty Max” awaits Zolgensma funding application results

Jan 28, 2021 | 1:14 PM

It has been a whirlwind 24 hours for the family of Fairview’s “Mighty Max”, but with Wednesday’s news of case-by-case funding for the gene replacement therapy drug Zolgensma here in Alberta settling in, the journey to ensure young Max gets his treatment continues.

The drug has been needed by two-year-old Max Sych, who suffers from Spinal Muscular Atrophy Type 2, which is a rare motor neuron disorder that can affect the muscles used for head and neck control, sitting, crawling, walking, and swallowing.

Health Minister Tyler Shandro said Wednesday the province would help cover the costs of the drug on a case-by-case basis, which prior to that announcement, would have come in at an estimated cost of $2.8 million CAD for the family.

FROM WEDNESDAY: Zolgensma to be funded on case-by-case basis in Alberta

That helps bring Max one step closer to the proverbial finish line, but much work still remains.

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“It was a crazy day yesterday, to say the least,” said Bryarly Parker, Max’s mother, in a video posted to Facebook. “We are so thankful to be in the community that we live in.”

Parker took time in the video to thank everyone in the Peace Region and beyond who either helped in the many fundraising efforts undertaken by the family and area residents, advocated to MLAs, ministers and other levels of government for the drug to be approved and funded, as well as brought awareness to this rare disease.

“This is because of you, and you’ve done that for us, and we could not have done this on our own,” added Parker.

Bowden Sych, Max’s dad, says they and their doctors have already started on the application process to receive the funding.

With that, it becomes a matter of wait-and-see for the family as they hope to receive the needed funding.

“We are on pins and needles,” said Bowden.

“We wait to see what comes back, and so for now we just move on the same way we’ve been going,” added Parker. “We continue our fundraising efforts, we continue talking about this disease, because there are still other families that need help.”

A GoFundMe page established for the family has raised over $1.1 million, which anyone interested can donate to here.