Photo supplied by Bowden Sych

By Shane Clausing

Mighty max

Fairview family seeking $2.8 million for drug that could cure son’s rare disease

Nov 30, 2020 | 2:53 PM

A Fairview family is asking for help in raising money for a drug that could help cure their son’s rare disease.

The Sych family is on the search for the drug Zolgensma, a drug that helps those who suffer from 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 muscles as they get older.

The drug Zolgensma is currently not approved or funded by Health Canada. It is available in the United States, but comes at a cost of $2.8 million Canadian and must be given to the child before he reaches the age of two, to ensure the best results.

Max Sych, also known as Mighty Max, suffers from Spinal Muscular Atrophy type 2. His father Bowden, says that getting this drug for his son would be significant.

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“It’s the closest thing there is to a cure and for us to give him the best chance for walking, standing and living a normal life.”

In Canada there are other treatments available for Spinal Muscular Atrophy, but nothing he believes is as strong and effective as Zolgensma.

“There are treatments available in Canada called Spinraza and it’s actually a spinal injection,” said Bowen. “They have to put him (Max) out and inject it into his spine every four months for the foreseeable future.

“That one is covered by the Alberta Blue Cross, but it’s $120,000 per injection. What that one does is it just slows the progression of the disease, so it’s not actually a fix, it’s more of a temporary band-aid.”

In order to get Spinraza, the family has to make the trip down to Edmonton every four months. Bowden says that if they could get Max Zolgensma, it could make it so the family doesn’t have to drive to Edmonton to get Max treatment again.

“Ultimately, Zolgensma is very expensive, but in the long run it is cheaper than the current approved therapy and it’s a cure. It’s a one hour infusion and it’s a gene replacement, so it actually fixes the problem.”

As the family tries to raise $2.8 million for the drug, there is some hope that they’ll get be able to apply to get Zolgensma without having to go to the United States. The family is looking to temporarily get the drug approved in Canada for emergency use.

The drug is currently being studied by Health Canada to potentially be approved, however, Bowden says while it’s great that the drug could be approved in the future, Max needs it by January, when he turns two.

According to Bowden, the family plans to meet with their local MLA and MP to discuss getting the drug temporarily approved for emergency use. He also said that he’d like to get in touch with Alberta’s Minister of Health, Tyler Shandro, to see if there is anything that he could do to get fast track the drugs approval.

The family launched their GoFundMe campaign for Max on November 29, and as of the afternoon of November 30, over $100,000 has been raised towards Max’s treatment.

Bowden adds he’s grateful for the incredible amount of support from people in the community and around the world.

“We live in a truly remarkable community and we live in a very special place. We’ll never be able to thank everybody enough, but hopefully one day, we’ll be able to pay it forward.”