If it wasn’t for the wheelchair, you wouldn’t know the blonde-haired woman with the big smile is facing life or death.

Twenty-three year-old Shailynn Taylor from Moose Jaw has Type II Spinal Muscular Atrophy (SMA) which, in its severest form, kills most before their second birthdays.

One in every 6,000 Canadians are diagnosed with the muscle wasting disease that makes simple activities difficult like picking up a dropped credit card.

Doctors said Taylor likely wouldn’t live to be a teenager, but she’s beating the odds with her fighting spirit.

Her eyes lit up when Health Canada approved the drug nusinersen, sold under the brand name Spinraza, that could strengthen her muscles.

Then she saw the hefty price tag of $150,000 per dose, which the government only covers for babies with the severest cases.

For optimal effect, Taylor needs six doses in her first year of treatment and three doses every year for the rest of her life.

She couldn’t afford it on her own.

Several people have donated money to pay for the life-changing drug, including a businessman from Texas who donated over $60,000.

“That was incredible. He had never met me at that point and just chose to start fundraising because he believed in my story,” she said.

The Generosity Club at Westmount Elementary School in Moose Jaw also raised over $1000.

“I feel honoured that (children) are doing that kind of thing for me, but I also love the lessons they’re learning from hearing about my story and deciding to do something about it.”

Taylor’s now had four doses of Spinraza.

It had instant benefits, she explained, giving her more energy and allowing her to steadily sit upright.

“My life has completely opened up again. I was always like ‘I’ll never have kids, I’ll never have a family’ and suddenly those are all options,” she said.

When she was young, Taylor used physiotherapy, swimming and horseback riding to keep her muscles active.

By the time she was 10-years-old, she could no longer walk.

Over a decade later, she continues to find ways to carry out daily tasks independently, living on her own and studying criminal justice in Calgary.

Guilt weighs heavily on her knowing many others haven’t experienced the benefits of Spinraza.

“I only expected to get one dose,” she said. “I know that those three additional doses could really help three other people with SMA.”

The drug is injected into the spinal cord.

“Every dose I got, I kept thinking ‘I can’t do this forever.’ It was such a painful procedure,” she said, adding the doctors had trouble inserting the needles because of a curve in her spine.

As painful as it was, Taylor fought through it knowing the four doses qualified her for a clinical trial in New York for a different, unapproved drug.

She’ll take it orally as part of her daily routine—and free of charge—while she continues to fundraise and advocate for everyone with the disease to have access to Spinraza.

“(I don’t want) for there to be a time when people fighting for Spinraza just give up and accept that they’re never going to be able to afford it or access it. That’s my worst nightmare,” she said.

Medication isn’t the only thing that can improve Taylor’s quality of life.

She’s currently trying to fundraise $30,000 for Atrej, a 90 pound English lab service dog she fell in love with.

“I called my mom and I was like ‘I know we just spent so much money on treatment, but I need this dog,’” she said. “We bonded instantly. He was glued to me. He wouldn’t even look at the trainer anymore.”

When Taylor gets Atrej in May, he’ll help her open doors, pick up items and make her more visible while crossing the street.

A University of Regina event, Pups and Pints, on Jan. 31 raised money for Atrej.