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Mount Royal University student holds hope in costly drug
Published Wednesday, June 13, 2018 9:58PM MDT
A young woman suffering from a rare, debilitating muscular disorder says she is looking at the world in a different way after complete strangers helped fund a very costly procedure to help her get better.
Shailynn Taylor was diagnosed with spinal muscular atrophy when she was just 18 months old.
The disorder affects the areas of her nervous system that control muscle movement, eventually creating severe physical challenges.
“I was able to walk until I was eight. I could stand until I was 10,” she says. “My arms are weaker than a toddler’s limbs would be. Slowly, I’ll lose the ability to eat on my own, breath unassisted.”
Her doctor said that she would only live to be 13, but she’s surpassed that estimate by nearly a decade and hopes that a miracle drug known as Spinraza can help stop her illness from progressing.
Unfortunately, the problem is that Spinraza is one of the most costly drugs in the world, costing about $60,000 for a single dose.
But if the studies are to be believed, the drug has an immense impact on sufferers of SMA, halting the disease in some and even reversing the damage in others.
Taylor’s parents, who live in Saskatchewan, aren’t able to get their insurer or the province to cover it.
While a Go Fund Me page has helped her raise $80,000, that’s enough for just one dose, but six are recommended for the first year.
She says that she wants Spinraza to be available to everyone suffering from the same disease she does, no matter where they live.
"SMA doesn't affect your brain at all and so each one of us with SMA are trying to have a future, career, we want to go to school, move out we want to develop a life of our own. There's a drug available that could make that possible for us. It's available to everyone else but there's no access to it without the kindness of people willing to pay their own money for the drug.”
Taylor says she will be continuing to advocate for coverage for Spinraza for her and others with SMA.
(With files from Brenna Rose)