Mighty Max Sych (seated, middle) received his Zolgensma treatment for his Spinal Muscular Atrophy back in March (Photo supplied by Cara Hammermaster Photography)

By Shane Clausing

Mighty max

Mighty Max progressing well following Zolgensma treatment

Apr 29, 2021 | 6:25 PM

Just over a month-and-a-half after receiving his Zolgensma treatment, Fairview’s Mighty Max Sych is back at home and progressing well.

The drug Zolgensma is used to help cure the disease Spinal Muscular Atrophy (SMA), which is a rare neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting, which two-year-old Max was diagnosed within 2020. The disease makes it tough for children to grow muscles as they get older.

Bryarly Parker, Max’s mother, tells EverythingGP the drug has worked better than they expected since he received the treatment in March.

“Max is doing extremely well and there’s been a few surprises that we’ve had,” expressed Parker.

“He’s starting to put sentences together. Before Zolgensma, we were at about 20 words and now he’s up to over 100 words. He tries as many words as he can a day.”

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Parker adds that Max’s physical strength is also quite impressive.

“My dad had made a little walker for him out of PVC pipes because we are waiting for an actual walker. He made one for him and Max is standing at it and trying to walk forward and putting weight on his legs. All with assistance, but it is incredible because before he could barely hold himself up.”

Parker also mentioned that Max’s progression after his Zolgensma treatment has caught the attention of parents who have also gone through the same situation with their kids.

“Some kids do absolutely incredible things, and some kids just improve a little bit,” said Parker.

“When other parents that have children with SMA that have been dosed with Zolgensma reach out and say, ‘I can’t believe he’s doing these things. It took our son or daughter this long to kind of do these things and he’s doing it so quickly,’ it brings a tear to your eye because you are just super excited for Max and what he’s capable of if this is just the first little bit.”

Parker tells EverythingGP because Zolgensma is such a new drug, there is only limited data on what it can actually do. So, they did not expect Max to improve his speech at all from the drug.

Because of the COVID-19 situation, Mighty Max is doing a little bit of physiotherapy at his house to help his muscles grow.

“The physio gave us some work and what we were supposed to do every week,” said Parker.

“We try for an hour a day to do things with him. Walking is a physio and any sort of climbing for him is a physio. As much as he can use his legs, arms and use those muscles he doesn’t really have a lot of is his physio.”

Mighty Max and his family also follow up with a kinesiologist via Zoom who helps keep track of Max’s progress.

Max is currently on a drug the drug prednisone which is a steroid to help the immune system recover after receiving Zolgensma.

Getting Zolgensma was a mission for Mighty Max’s family. For two months the family had to attempt to raise $2.8 million to pay for the drug, which at the time wasn’t approved for use in Canada.

In mid-December 2020, Health Canada approved the usage of the drug in Canada and provinces would be able to fund it on a case by case basis. In February, Mighty Max was approved to receive Zolgensma funding.

Depending on the situation, Max could be off of the drug in the next few months.

After Max is off the drug the family will be able to do in-person physio sessions in Edmonton, Calgary and Grande Prairie.

The family wanted to once again thank everyone in the Peace Region and all of Alberta for helping Max get this life-saving treatment.