WHAT IS SMA
Shailynn was diagnosed with SMA (Spinal Muscular Atrophy), an incurable and terminal disease, when she was just 18 months old. She had low muscle tone and was unable to reach milestones with the expected strength. Shailynn was given a life expectancy of 13 years, and when she was 19, she was told she had two good years left. Every day she wakes up is a miracle; she's 22 years old.
Imagine your brain being unable to communicate with your muscles due to a disease that destroys the motor neurons that control your arms, legs, chest, face, throat and tongue. That’s SMA, or Spinal Muscular Atrophy. About 1 in 6000 newborns are affected, and about 1 in 40 people carry the gene for SMA.
Just over one year ago, everything changed. Spinraza was approved as the first available disease-specific treatment for SMA and it became available in Canada. After a year of patience, persistence, and meetings, we find we are unable to access government or health insurance funding for the one treatment that can extend Shailynn’s life. One dose of Spinraza comes with a cost of $60 000. With the initial dose, the progression of the disease and the weakening of the muscles can be stopped. By the second dose, the missing SMN protein begins to rebuild - meaning potential regeneration of strength recently lost in Shailynn’s arms, speech, neck and core.
Once funding is in place, Shailynn will receive the treatment in Calgary where she is enrolled in University. The first dose of Spinraza could guarantee that Shailynn will never lose the ability to breath or swallow.
Although it is recommended that she receives five treatments in the first year, any number of treatments will be beneficial. The money raised from this Go Fund Me page will go exclusively to her medical treatments and expenses.
In the past year, the fight for access to SMA treatment has brought together a community of strength, generosity and compassion like never before. Every little bit counts.
Shailynn has been a voice for SMA. A few of her numerous contributions include advocating for funding at Parliament, speaking at national and community-based events, and mentoring families and individuals with SMA.
For those that know her, Shailynn has a voice that needs to be heard. Ask her yourself- you can find her story @ShaiBrookeTayy on Instagram.