After raising nearly $250,000 for potentially life-saving medical treatment, the hard part was supposed to be over.
Instead, Shailynn Taylor has a bigger obstacle in her way: the hospital itself.
“It’s not like we have time. It’s not impatience. Our disease progresses daily,” Taylor said.
Taylor was diagnosed with spinal muscular atrophy type 2 when she was 18 months old, and was given a life expectancy of 13 years.
Now a 22-year-old student studying to become a probation officer, her prospects were forever changed when Canada approved the first and only treatment for SMA last year- with a price tag of more than $60,000 per dose.
“There’s hope again,” Her mother, Shaunna, said. “We had lost hope. We were watching her decline. I left my classroom and I was crying in the hallways. Everyone asked ‘what happened?’ I said ‘it’s approved, it’s here’. We waited 22 years and it is finally here.”
Between a GoFundMe and countless local fundraisers, the family raised enough money for three of the recommended four base doses. Taylor received her first successful injection of Spinraza on June 25.
Its effects were nearly immediate.
“My core was able to hold myself sturdy,” Taylor recalled. “My voice didn’t start wavering as quickly if I was talking for a long time. I could eat a full meal without getting exhausted and struggling to swallow.”
The Spinraza dosing regimen recommends patients get four doses in four months at the start of their treatment.
But when Taylor tried to book her next dose, she hit a wall. Canadian hospitals are refusing to treat her until an administrative system is in place for adults.
“I was devastated. I was frustrated. I was angry,” Shaunna said. “I started making phone calls, and just said that can’t be. That can’t be the answer we’re going to be given. We can’t wait.”
It could be at least two months until Taylor can access the potentially life-saving drug again. While she hopes to continue her own treatment, she fears for other SMA patients who haven’t been able to get a single dose.
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“I know the pain they’re in and the fear of the future and the fear of what life with SMA looks like- and what it will take from you next,” Taylor urged. “I’m living proof of the amazing results of one dose, and still the hospitals can’t find a way to administer it.”
While Shailynn’s future is uncertain, she’s determined to make the most of it. She’ll return to university in Calgary in the fall, and continue to advocate on behalf of those with rare diseases.