Mighty Max. Photo Credit: Bryarly Parker.

By Shane Clausing

More steps to go

One step closer: Mighty Max approved for Zolgensma treatment

Feb 22, 2021 | 1:03 PM

Fairview’s Mighty Max Sych has been approved to receive the drug Zolgensma, the costly drug that is effective in helping treat the disease Spinal Muscular Atrophy.

Spinal Muscular Atrophy 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 their muscle as they get older.

The drug Zolgensma was recently approved by Health Canada in December, and in late January, Minister of Health for Alberta, Tyler Shandro, announced the drug will be funded by the province on a case-by-case basis.

Over the last several weeks, Sych and his family worked with Max’s neurologist to gain approval to receive the treatment. The process involved filling out applications, as well as some blood work to make sure Max is healthy enough to receive the drug.

Bowden Sych, Max’s father, says he’s elated to finally get to this point.

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“It’s a pretty unbelievable feeling,” said Bowden. “It’s just amazing.”

There are a few boxes to check off first, the family says, before Max can receive his treatment. That includes Max needing to gain some weight and taking another antibody test.

Bowden tells EverythingGP they do not yet have a specific date for when Max will officially receive the treatment. However, he says they are cautiously hopeful to get it administered in Edmonton by March.

Prior to the approval of Zolgensma, the drug needed to be purchased privately, at a cost of $2.8 million. When the family learned about Max’s diagnosis in November, they began fundraising for the drug. As of February 22, the family had raised over $1.1 million on a GoFundMe alone.

Bowden says they are still working with the province to determine if they’ll have to pay some of the costs of the drug, or if the province will fully cover it.

“We have a meeting this week and we’ll find out the story hopefully later this week.”

As yet another mountain has been moved for young Mighty Max, Bowden says he and his family are grateful to everyone who who advocated, donated or helped get their family to this point.

“We want to thank everybody for all the emails and letters and everything that was sent to MLAs, MPs,” said Bowden. “The people made this happen.”