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Two Lloydminster residents rallying support around child’s rare disorder treatment

A Fairview toddler needing a life-altering gene therapy is getting a helping hand from people across the province here in Lloydminster.

Max Sych, who has the affectionate nickname Mighty Max, was recently diagnosed with Spinal Muscular Atrophy type II. A rare neuromuscular disease in the part of the nervous system controlling voluntary muscle movement, people with SMA Type II will experience difficulty walking, sitting up on their own, swallow or breathe.

While there are treatments available to slow progression, a one-time treatment called Zolgensma has been found to significantly increase length and quality of life for people with SMA Type II. However, where the challenges come for the family is in the access and price. Health Canada approval for Zolgensma was only greenlit this week, and it comes with $2.8 million cost if not covered.

Max is also in a race against time, as for it to be safe and effective, he must get it before his second birthday this January.

To help, local residents Alecia Denis with Cherish Death & Mourning and Jenny Bennett, founder of JBEN Somatics, will be holding a “Walk For Max” event this Sunday, December 20th, to raise funds for the family. Denis says she was made aware of Max’s need through one of his family members in town, and they decided to step up right away to help how they could.

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Denis explains that she knows that while people around town have a giving heart, but knowing that these are tough times, they’re hoping to raise what they can.

“We know that times are tough for everybody, but I just want people to keep in mind that if this was their child, they would do everything in their power, so if they can just find it in their hearts, [even] if they can’t afford to donate, share the post, walk with us, and spread the word.”

The Walk for Max will begin at 1 PM on Sunday at the Co-op gas station East. From there, walkers will go all the way to the Hampton Inn West, and then all the way back to their starting point. A donation box will be set up from 12:45 to 1:45, and then again from 3 to 4 when they return from the walk. Walkers will be following COVID-19 health guidelines including masking and distancing, and people have the option to stop by and donate and then go their own way if they so choose.

Denis adds that they’re hopeful that this event also gets the word out about what SMA Type II is, and what kinds of changes could be made for treatment access.

“I talked to the Mother of Max this morning, and she had said too, that even if they don’t reach what they need to to get treatment, they’re hoping that by getting the awareness out there, that the next family out there that is faced with this struggle doesn’t have to raise money, that Health Canada is just going to cover it.”

A GoFundMe page has also been launched in support of Max, and currently has $538,000 in donations as of the writing of this article.

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