Like most 14-year-olds, Pyper Whitecotton is looking for some independence.
The small mobile home in Spruce Grove she shares with her mom, Heather Forsyth, is getting a little too cramped for the duo.
Pyper was diagnosed with Spinal Muscular Atrophy Type II early in life. After her diagnosis, Forsyth had to educate herself quickly.
“Basically, SMA is a progressive neuromuscular disease.
“The cells in your spine tell your nerves to tell your muscles to move. With SMA, those die off. That’s why all the kids get weaker and weaker as the days go on,” Forsyth explained.
LISTEN BELOW: Run raising funds for Spruce Grove girl diagnosed with genetic muscle disease
Forsyth said the pair are currently in need of some big changes to their living space.
“We need a bathroom that suits her needs, a really big one with a table where she can get changed. Where I don’t have to lift her out of the bathroom, I’ve hurt my back for the second time,” Forsyth said.
“A bigger space [in general] will help keep her life normal. Have a little bit of space for her and her friends. Right now she has nowhere to go to just be a kid.”
As Pyper explained, she wouldn’t mind some more breathing room.
“It’s not that nice having a mom around all the time.” Pyper laughed. “I’d like space to go somewhere with my friends, that’s not with her.”
That’s when CISN Country 103.9 host Chris Scheetz stepped in.
“I met her at the Stollery years and years ago. I fell in love with her and we developed a special relationship, like I have with many of the families.”
In January at the Stollery Radiothon, Scheetz told Pyper he was going to take her for a run.
“She goes on them with a special wheelchair and I told her we’d go together. One thing led to another and I found out the family was trying to raise money to get them into a better home. I decided I was going to turn her run into something many people could join us on and help them out even more.”
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“It was all a big surprise. I got a cryptic message from Chris, asking us what we were doing July 27. After that, I figured he was planning something,” Forsyth said.
Pyper qualified for a new treatment called Spinraza about a month ago, set to begin sometime in October.
“Spinraza is not a cure, but it’s a treatment. It’s proven itself to stop the progression of the disease. The earlier you get it, the better.”
The series of injections is placed into cerebral spinal fluid, via the bottom of the spine.
“Basically, it tricks the body into thinking you have this missing gene that causes SMA. It’s pretty cool.”
The treatment is also exponentially costly — Forsyth said it’s one of the most expensive drugs in the world.”
“It’s pretty darn expensive. It’s in the hundreds of thousands of dollars,” Forsyth said. “Every province is making its own rules as to who gets it and who doesn’t.
“I wish Canada would step up and be a leader and care for everyone. There are adults out there that are still fighting for it. There are so many people advocating.”
LISTEN BELOW: Ryan Jespersen chats with Pyper & her mom
“I do this on my own,” Forsyth said. “As a parent, you always want to do your best to give your kids everything. I just decide that she needs something or we need something to have a safe life, a productive life, we do it and we go for it. I have the support of my family too.”
Pyper said she dreams of one day becoming an interior designer.
“I’m really lucky. Considering her circumstances, she has a really good outlook on life. She’s a really happy kid, Forsyth said. “With SMA, it’s just about treating them like everyone else. Go to school, have friends, learn lots.”
The Run for Pyper will be held Saturday at the Edmonton Corn Maze. You can donate here.
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