Shailynn Taylor of Moose Jaw, Sask., has been fighting for her life since she was almost two.
She was diagnosed with spinal muscular atrophy (SMA), a degenerative muscular disorder that results in the loss of motor function in many of her muscles. She was not expected to live past 12 years old but at 22, she continues to be a national advocate for the disease she battles every day.
Spinraza is the only approved treatment for SMA, but Health Canada only covers it for children diagnosed with the disease when they are seven months old or younger. For adults like Taylor, patients are expected to find other ways to pay for the $60,000 per dose treatment.
On May 25, Taylor received disappointing news that she would no longer be admitted into a clinical trial conducted by Roche for a drug that could be administered orally rather than by spinal injection like Spinraza, and have similar results.
“I found out that they no longer had adult spots available in the trial even though they had been telling me all along that I was the first one on the list for the trial and that I would get in,” Taylor said.
The trial called SUNFISH had 30 spots for adults between the ages of 12 to 25 and was globally competitive. This allowed any SMA patient that met the clinical trial requirements to apply for from anywhere in the world, according to Roche spokesperson Jennifer Fleming.
When asked to comment on Taylor’s situation, Roche said it does not employ the doctors or investigators that speak to patients about clinical trial recruitment and could not speculate as to why Taylor would have been promised a spot.
Taylor was determined to find another way to get the treatment that could potentially save her life. She spoke with her neurologist and decided to set up a plan to receive one dose of Spinraza in Calgary at the Alberta Children’s Hospital.
Taylor said she was prepared to take out a loan and wait for insurance to cover whatever they could. She was hoping to receive one dose of Spinraza and then apply for a different clinical trial but she wasn’t sure when she would be able to get the first dose due to the costs.
Things changed when she learned her mother’s friend, Debbie Taylor-French, started a GoFundMe campaign to help cover the costs.
Taylor-French, a close family friend from Moose Jaw, has known Taylor since she was seven years old. She told Global News she’s watched Taylor grow into a “remarkable young lady” and due to her recent decline in health, felt something needed to be done.
As SMA progresses for Taylor she said she’s found her pain and exhaustion triple in the last year. She also has trouble swallowing and is aspirating fluid into her lungs, putting her already weak lungs at higher risk for illness like pneumonia. These are all symptoms of the later stages of SMA, she said.
Within two days the GoFundMe had raised over $20,000. Taylor-French said she didn’t expect the fundraising campaign to be so successful so quickly but also wasn’t surprised by how the community of Moose Jaw has come together to support the family.
“They’re the kind of people that give and give and give but never ask for anything in return,” Taylor-French said of the Taylor family.
“We felt that it was time to step up.”
The GoFundMe had raised more than $52,000 of it’s $200,000 goal as of June 8. The community of Moose Jaw has also planned several fundraising events in addition to local businesses donating profits from sales of specialty items.
“It’s incredibly uncomfortable for me to have people fighting for my life but also a reflection of what I’ve been doing and how they are willing to help me in turn,” said Taylor.
Taylor is hopeful that this treatment will, at the very least, stop the disease from progressing any further allowing her to maintain her current lifestyle of going to school, working and advocating for others with the disability.
“The hope of having an actual life and being able to plan for the future is amazing,” said Taylor.