A Moose Jaw family was told many years ago 'your child has SMA,' and that forever changed the way the Taylor family would live their lives.
Shailynn Taylor, who is from Moose Jaw but now lives in Calgary, was diagnosed with Spinal Muscular Atrophy(SMA) at a mere age of 18 months. Following the earth-shattering news, her parents were also told that she would only live to about 13 years old.
She is now 22 years old. However, this condition is quickly taking a toll on her health. Taylor explained that because of SMA she is no longer able to do many things that people without it do each and every day.
"I've lost the ability to stand, to walk, I'm struggling with the ability to swallow currently. Other abilities that will be lost (are) breathing on my own, eating on my own and feeding myself," explained Taylor.
She noted that since she can remember the people around her have been doing everything they possibly can to alleviate some of the discomfort or to hopefully find a cure.
"I'm super lucky, my parents and the community of Moose Jaw tried every possible therapy and treatment that they could do in Moose Jaw for me. From riding horses, to swimming, to weekly massages. The community has tried everything to keep me strong and it truly has kept me strong. Now more than ever access to treatment is important to me."
Unfortunately for many years there was no treatment available to Canadians suffering from SMA. However, just over a year ago Taylor was surprised with the life-changing news that Spinraza was approved for people living in Canada. Spinraza is the only SMA specific treatment and comes at a high cost that isn't covered by life insurance or by the government.
She quickly found out after becoming an advocate for people with SMA and fighting for necessary medication and treatment, that in the past parents we told to "just take their babies home and love them" after being told their child was diagnosed with it.
Despite this seeming like an uphill battle, Taylor is determined to make Spinraza available to everyone who needs it one day and has goals for her own health journey as well - one of which includes being able to transfer herself, which would mean regaining strength in her upper body.
"I want arm strength to cook and clean, possibly have kids. Right now a day at an office job physically exhausts me; to have any kind of physical strength would be incredible for me and the stamina to get through to carry a more productive life is really what I'm hoping for."
But don't let her humble personality fool you; this young woman is involved in many things despite her medical situation. She is currently finishing school with the hopes of having a degree in the near future, she is spending the summer working as a probation officer, Taylor currently sits on a board created by a family who lost their own child to SMA, and she also provides support to other families who hear the same fate for their young child.
Among the many roles she currently has, she also speaks at various events about her condition and the importance for all families to have access to treatment. She has made presentations to the government and has also been a special guest and guest speaker at local ceremonies and fundraisers in Moose Jaw.
Recently, there's a been a tidal wave of support for this young woman. Her friends and family have created an army of volunteers and people who want Taylor get the treatment she needs. And finally on Monday this week, her mother and father heard the news that they've spent years praying for, and Taylor will be receiving a does of Sprinraza from SMA 360.
There's been an active go fund me page that's been collecting donations for the past few weeks, which is the main reason why she can now get the treatment she's been longing for. But it doesn't stop here. Her family and friends also have a goal of raising $200,000 to cover her medical costs.
With such a lofty goal, there have been multiple fundraisers, events, and initiatives created, all of which can be found on the 'Hope For Shailynn Taylor' Facebook page.
Taylor said she can't believe the support and love she's been given by Moose Jaw residents and can't wait to be in the Friendly City to thank everyone personally.