FAIRVIEW – A Fairview family is seeking help for their son, Max, who was recently diagnosed with Spinal Muscular Atrophy type 2.
Max Sych, known as ‘Mighty Max’ by those close to him, is no stranger to adversity. His mother Bryarly had complications during the pregnancy, which resulted in her spending over four weeks on bedrest and giving birth to Max at only 25 weeks. The hospital in Fairview did not have a delivery ward, so Max and his parents were immediately transferred via NICU air ambulance to Edmonton, where he would spend the next 91 days fighting for his life.
Born in January 2019, Max weighed only 1 lb 11 ounces. He had numerous blood transfusions, a bedside surgery, a brain bleed, required ongoing respiratory therapy and was discharged on oxygen. He would spend a total of six months attached to an oxygen tank night and day, and four additional months on nighttime oxygen requiring special care from his parents.
Max was developing at a normal rate and reaching all the appropriate developmental milestones. But in August, his parents noticed a change. He stopped bearing weight on his legs completely, collapsed when put at his table, and arched his back when family held his hands to walk.
In November, genetic test results returned a diagnosis of a rare neuromuscular disease called Spinal Muscular Atrophy (SMA).
SMA is a rare neuromuscular disease which leads to a progressive loss of muscle strength that affects the ability to walk, swallow and breathe. One in 10,000 children are born with the disease. In Type 2 SMA, children can sit but cannot walk on their own. Remarkably, this condition is separate from his prematurity.
In Canada, Max has access to Spinraza, a prescription drug that can increase survival and motor function. But Max’s best chance at being able to walk and live a long and healthy life is receiving a dose of Zolgensma, a one-time treatment that is not approved or funded by Health Canada. Zolgensma replaces the faulty gene at the root of the disease. At a reported $2.8 million (CAD), it is the most expensive one-time dose therapy in the world and must be given prior to Max turning two, a timeline that likely falls somewhere between his actual birthday in January 2021 and his due date at the beginning of May.
Max’s father Bowden, a former player and coach with Fairview Minor Hockey, says that his goal is to give Max a live a long and normal life.
“Playing hockey growing up and moving into coaching was so special for me, and I quickly realized how much I wanted to be able to coach my son once he is old enough to play,” said Bowden. “We are super grateful that a solution (Spinraza) exists in Canada, however we believe that Zolgensma will give Max the best quality of life moving forward.”
The family did not have a lot of time to absorb the information, but the community of Fairview was quick to act. They immediately set up a GoFundMe page and began soliciting donations for the medication.
“I cannot understate how amazing the community of Fairview has been since we heard the news,” said Bowden. “They have been incredibly helpful over the past few weeks, and I am realizing now that I live in the most supportive community in the world.”
Sheila Landry, a community member in Fairview, is quick to point out just how important Max, Bowden, and Bryarly are to Fairview.
“Bowden is a life-long hockey fan having played minor hockey in Fairview growing up. He continues to support Fairview Minor Hockey as a coach (stepping back from this when Max was born) and as a sponsor,” said Sheila. “Bryarly is also a huge supporter of our small town and sport programs. She has coached so many of our local youth in basketball. We as a community would like to show the same support that they have showed us.”
The GoFundMe currently sits at over $325,000 on the way to the $2.8 million goal.
You can follow along with Max’s journey on Instagram @movingmountainsformightymax.