A Fairview family is racing against the clock to raise enough money to afford treatment for their son’s rare disease. “Mighty Max” Sych was recently diagnosed with Spinal Muscular Atrophy type 2, a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles.
Without treatment, muscle weakness develops in infants between six and 12 months of age. Children with SMA Type 2 can sit unaided, but cannot stand or walk independently. Feeding and breathing issues also develop. According to Cure SMA Canada, the disease affects roughly one in 6,000 children.
Max’s father, Bowden Sych, says the journey didn’t start with SMA.
“Max was born four months early. My wife went into labour in Fairview, which doesn’t have a delivery ward. He was rushed to Edmonton where he spent the next three months of his life.”
“He was on at-home oxygen for a year so we had to carry around an oxygen tank. We finally got over that and things seemed to be looking good, he was starting to stand and take a couple of steps, assisted, and then he started to progress,” Sych explains.
He adds Max’s SMA diagnosis was confirmed in late November, after consulting with multiple physicians concerning a lack of muscle mass and weight gain.
There are treatment options for SMA in Canada, such as Spinraza— a prescription drug taken during Max’s entire life that can increase survival and motor function. His best option, however, is a one-time treatment called Zolgensma. Offered in the United States, the drug would replace the faulty gene at the root of the disorder.
The catch is the drug is not approved in Canada, is not supported by Health Canada, and will cost $2.8 million to receive. Another barrier is, Zolgensma is only approved by the U.S. Food and Drug Administration for infants under the age of two, as it is considered too risky to use in older children. Max’s second birthday is in January.
“It’s another barrier to overcome. You have to find a physician who’s willing to prescribe it over the age of two as kind of like an ‘off-label’ prescribing,” explains Sych.
He adds he doesn’t think what they’re doing is extraordinary, suggesting the lengths they will go is simply what any parent would do.
“I think anybody would do anything to make sure their child can walk and stand and have as normal a life as possible. Right now we’re just focussed on absolutely anything we can do to get him this treatment,” he adds.
The family has launched a GoFundMe page as a platform to help raise the necessary funds for Max’s treatment.