Photo Credit: https://twitter.com/mightymaxsych

By Shane Clausing

mighty max one year later

Mighty Max getting stronger & growing nearly a year after receiving Zolgensma

Jan 31, 2022 | 2:22 PM

It has been just over one year since the Alberta government announced it will begin funding the drug Zolgensma on a case-by-case basis for those suffering from Spinal Muscular Atrophy (SMA).

Zolgensma is a gene therapy replacement drug that can help people who are suffering from SMA.

SMA 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.

Fairview’s Mighty Max Sych was approved to receive funding for the drug towards the end of February 2020 and it was administered at the Stollery Children’s Hospital in Edmonton on March 16.

MORE: One step closer: Mighty Max approved for Zolgensma treatment

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

Since receiving the treatment, Max’s mother Bryarly Parker says he’s been able to gain a significant amount of strength.

“It’s been 10 months since he’s received treatment and it’s been incredible. At this point (without Zolgensma), Max would probably be in a wheelchair and there would be no hope of him ever walking or standing on his own,” said Parker.

“At this point, we’re pretty close to the standing on his own. He still has a little trouble with his weight-bearing. His strength in general, his upper body, him being able to climb on things and do a lot of things himself without my help, (its) absolutely phenomenal and that’s been a blessing.”

Because Zolgensma helps muscles grow in a more traditional way, Parker adds the drug has also helped Max with his speech.

“Kids with SMA have a harder time with their muscles. It takes a lot of muscles to talk and now (with his speech) he’s hitting the milestone of a three-year-old. It’s just something we don’t really have to worry about, so that’s been nice,” she explained.

In order for Max to build muscle, the family has had to travel to Edmonton or Calgary once a month to participate in special physiotherapy sessions.

“It’s a very slow process. We go to physio and there’s a physiotherapist, a couple of assistants distracting him and keeping him busy,” she explained. “The progression videos are really what keeps us going to it. Seeing what he was able to do back (last year) as opposed to now, it’s absolutely incredible (to see) how far his strength has come.”

Parker mentions the toughest part of the body for Max to strengthen is his glutes. As a result, Parker says her mom has to make special pants for him because he has such a small waist.

While nobody knows what the future is for Max and his family, Parker tells EverythingGP their goal is for Max to keep growing and getting stronger.

“I think the end goal here is to have him as independently mobile as possible and just keep that going. Hopefully, we can put him in pre-school in September and we don’t have to worry about too much help needed,” she explained.

“He’s a pretty independent kid and he will find a way to do anything he possibly can with what he has available to him. It’s great to see and we’re really thankful the Government of Alberta saw such a need to help us out with that because it’s made the biggest difference in the world.”

Parker also wanted to thank everyone in the Peace Region and across Alberta who helped raise money for Mighty Max and got the attention of provincial officials.

“We’re so grateful for Fairview, the Peace Country, businesses and people across the Peace for helping us achieve what we were. We will never stop advocating for our son and anybody else.”