The struggle goes on for adults dealing with Spinal Muscular Atrophy (SMA), as the health system has stopped adults with the neurological disease from receiving the treatment since there is no scientific proof.

One local woman who the community has supported immensely as she struggles to treat her SMA is Shailynn Taylor. At first, Spinraza was a viable treatment for the disease, but according to Taylor, she "slipped through the cracks" to receive one dose for $63,000. Not only does she now have to raise money for the injections, but she also has to find a new way to receive it.

The current plan has Taylor and her family and friend working to get a private clinic on board to give her the doses. They are hoping to get 4 doses, which is the recommended loading dose for the treatment. This will help her get the best and most effective benefits from the drug.

After one dose, Taylor has regained a lot of her strength. One Facebook post details she struggled to do 10 lbs on a transfer press, but now can do it with 30 lbs.

Shailynn Taylor posted to social media shortly after receiving her first treatment to share her excitement with family and friends that her dream of getting the Spinraza treatment came true.

Taylor is now an advocate with someone she met on her SMA journey, Jessica Olstad, who had lost her child to SMA. They are travelling to Toronto together in November for the Canadian Organization for Rare Diseases conference, where they will get face to face with policymakers, the government, all levels of the pharmaceutical industry, and researcher so Taylor can put a face and story to the work they are doing for SMA.

Another advocacy trip for Taylor herself will be speaking at the International Day of Persons with Disabilities in Calgary.

"Because I was blessed to get this opportunity because I have a community that made it possible I'm using that too move forward and make sure that everyone can feel the benefits that I feel with Spinraza," Taylor said.

Next fundraiser to help Taylor with her journey trying to battle SMA will be another fundraiser put on by HOPE for Shailynn Taylor. This October 13th, they will be holding a cabaret at the Moose Jaw Exhibition Grounds.

"I truly believe without them (HOPE for Shailynn Taylor group) and without this community and the support that I've received, the people saying how happy they are that I'm able to access a drug like this. They do anything to help me get that drug, it's what keeps me moving forward, having that support behind me when I start to get frustrated with the fight."

The Bromantics will be playing and tickets are on sale for $35. You can find more detail on the HOPE for Shailynn Taylor Facebook page.