An Alberta family is breathing a sigh or relief, knowing their two-year-old son can move forward with getting treatment for a rare disorder.
Max Sych — or “Mighty Max” as he’s been called — has spinal muscular atrophy Type 2, a rare, progressive disorder that causes muscles to waste away.
When the little boy was first diagnosed late last year, he had access to Spinraza for treatment. The prescription drug could be given to Max for his entire life, and it can increase survival and motor function.
But his parents started to raise money for him to have access to Zolgensma, a one-time dose that would replace the faulty gene at the root of the disorder. The drug costs $2.8 million, and should be given before the age of two, or at a certain weight.
At the time of the diagnosis, the drug wasn’t approved yet in Canada, but by the end of January, that changed, the Alberta approved to cover the cost for some children in the province. Max is one of them.
Alberta announces interim access to Zolgensma for children suffering from spinal muscular atrophy
His parents announced the news on Instagram.
“It’s kind of surreal,” Max’s dad Bowden Sych said. “It seemed like such a mountain.”
“We just want to thank everybody, the fundraising is great, but what really made this happen was the advocacy,” Sych said.
“Not only is Max going to get this, but there are families and children that won’t have to go through what we did, they will be able to receive this drug a lot quicker and easier.”
Max needs to gain a little bit of weight and go for a blood test prior to the dose.
“(We are) very overwhelmed, we’ve been pushing for it for three months, but it feels like a very long time. We couldn’t have done this without the support system we have had,” Max’s mom Bryarly Parker said.
Bottle drive raising funds for ‘Mighty Max,’ Alberta toddler who needs 2.8M for life-saving drug
SMA is a disease that affects roughly one in 6,000 babies born, and attacks their muscular system, affecting their ability to develop and maintain motor skills like neck and head stability, sitting up, crawling, walking and even swallowing.
After the Zolgensma dose, Max will need to continue to do physiotherapy.
“I don’t think it will seem real until we start to see the affects from the medication. It just seemed like such a far away goal, and we are close but we are not there,” Sych said.
“I think when we see him stand for the first time, that is when we will really celebrate.”
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