Mighty Max and his parents, Bryarly and Bowden. (Photo Credit: Bryarly Parker YouTube Channel)

By Shane Clausing

Mighty Max

“I’ll get to see my son walk”: Mighty Max’s family thrilled with possible Zolgensma funding from province

Jan 27, 2021 | 2:14 PM

The family of Fairview’s “Mighty” Max Sych is still trying to absorb the gravity of Wednesday’s announcement from Health Minister Tyler Shandro.

Shandro announced Wednesday morning that the drug Zolgensma, a gene therapy replacement drug, will be funded by the province on a case-by-case basis in Alberta, which will hopefully be good news for the family.

Zolgensma is used to help cure the disease Spinal Muscular Atrophy (SMA), which is a rare neuromuscular disorder and results in the loss of motor neurons and progressive muscle wasting. The disease makes it tough for children to grow muscles as they get older.

Since Bowden Sych and his family learned of their son Max’s diagnosis of the disease in November, the family, and the community as a whole, have been trying to raise $2.8 million for the drug through various different fundraisers.

Zolgensma is known as one of the world’s most expensive drugs and up until December, was not approved for use in Canada. If it wasn’t approved by Health Canada, their family would’ve had to fly to the United States to get the treatment and pay for it on their own.

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Over the last two months, thousands have been raised from Albertan’s organizing bottle drives, doughnut campaigns and even a local man’s run from Grande Prairie to Fairview, all to raise money and awareness for Mighty Max.

Up until January 27, Max’s GoFundMe page was raised $1.1 million.

In a conversation with EverythingGP shortly after the announcement was made by Minister Shandro, Bowden says this is incredible news.

“I’m shaking. I’ll get to see my son walk and I’m just kind of absorbing it right now.”

Bowden adds that if it wasn’t for the help of residents of the Peace Country and Alberta, this simple announcement of potential funding probably would have never happened.

“The people of the Peace Country and Alberta have just been amazing, but the main thing is the awareness and attention these fundraisers have drawn. Without the awareness and advocacy, and all the emails, letters and press, this wouldn’t have happened.”

Bowden says he and his family are still awaiting the next steps to take now that the drug will be funded by the government on a case-by-case basis, and how the family must navigate the application process to receive the funding.

He adds his family has been in conversation with Minister Shandro’s office about getting the drug for Mighty Max. While Shandro couldn’t comment on specific cases of SMA during his news conference on Wednesday, Bowden says the province is aware of their situation and he is (cautiously) confident they’ll be able to get the funding, followed by the drug soon afterwards.

Alberta Health tells EverythingGP the drug can currently only be administered in Calgary at the Alberta Children’s Hospital. The Stollery Children’s Hospital in Edmonton is currently being reviewed as a second potential administration site.

Zolgensma is a gene therapy treatment and must be administered through an Intravenous line (IV) that is placed in the child’s arm or leg vein. Treatment must be administered in person, under the supervision of a physician specialist.

It is not known specifically how much of the drug will be funded by the province upon gaining approval.

The family is continuing to fundraise in the event they do no meet eligibility criteria. Anyone wishing to help can continue to donate to Mighty Max through his GoFundMe page.