Edmonton toddler Kaysen Martin’s birthday is on July 17 — normally a milestone to celebrate that’s now a terrifying deadline for his parents. Before Kaysen turns two, his family is in a race against time to raise millions for a life-saving treatment. So far, they’ve raced almost $300,000 thanks to an online fundraiser and thanks to a boost from Canadian actor Ryan Reynolds, they’re getting closer to their goal.
Kaysen has spinal muscular atrophy Type 1 (SMA1), a rare neuromuscular disorder that reduces his ability to walk, crawl, and eat food over time. Most children who have SMA1 don’t live past the age of two. The “Deadpool” actor donated $5,000 to a crowdfunding campaign helping Kaysen and his parents afford a single treatment of Zolgensma, a $2.8-million gene therapy drug.
Reynolds didn’t post about his charitable contribution on social media, but he extended his wishes to the family through a mutual acquaintance.
“The fact that he felt compelled enough to donate is huge. I’d just like to thank him very much from the bottom of my heart,” Lana Bernardin, Kaysen’s mother, told HuffPost Canada.
Other Canadian notables have pitched in to help change Kaysen’s life, including media personality Jillian Harris. She sympathized with Bernadin’s “panic” as a parent.
“Knowing that your little [baby’s] birthday is sneaking up in two weeks and you still have to raise $2-million to save his life?” she wrote in an Instagram story.
NHL hockey players are lending their support too: Former Winnipeg Jets’ player Dustin Byfuglien and his wife donated to the fundraiser, as did Matt Benning from the Edmonton Oilers.
Canadians urged to help
At $2.8-million, Zolgensma is widely reported as the world’s most expensive drug. While Kaysen’s family has raised over $300,000 so far, their fundraiser will need to generate a little over nine times that amount by his birthday, in order for the toddler to qualify for the treatment.
The public campaign to get Zolgensma for Kaysen has been run by 30 Canadian moms of children with special needs. Catherine Bangel is a member of this group. Bangel told HuffPost Canada they’ve been working tirelessly for the last two weeks to help Kaysen, as his second-birthday deadline approaches.
She urged Canadians who are financially able to help them out, especially hockey lovers who won’t be sitting rinkside because of the COVID-19 pandemic.
“If you want to donate the cost of your hockey ticket to Kaysen this year, we would be so grateful,” Bangel said. “We’d certainly love for him to live past the age of two and go see a hockey game.”
Red tape led to family’s dire situation
The fundraiser was started on short notice because of several barriers. Since Kaysen was diagnosed at eight months of age, his parents have been fighting even to get him access to Zolgensma, which is made by the pharmaceutical company Novartis. Zolgensma has not yet been approved by Health Canada, but a lottery program by Novartis gives the trial drug to 100 randomly selected babies over the course of this year, including in Canada.
Bernardin spent six months attempting to get her son entered into one of the lottery’s timed draws, which required her to get special permission from the government. As the pandemic raged on, the family had fears about Kaysen’s chances of survival (a case of the common cold left him in the ICU for a month and contracting the novel coronavirus could be fatal for him). She finally managed to legally have him entered for a draw in June, but unfortunately Kaysen wasn’t chosen. The next draw won’t happen in time for their deadline.
However, her efforts weren’t totally in vain. By getting him permission through Health Canada’s Special Access Program, Kaysen could receive the non-approved drug like Zolgensma from any source, as long as he could afford it. Without prior approval, they would not have been able to legally fundraise.
“If you want to donate the cost of your hockey ticket to Kaysen this year, we would be so grateful. We’d certainly love for him to live past the age of two and go see a hockey game.”
After significant delays caused by legal deliberation over bringing the drug into Alberta, Kaysen was recently approved for Zolgensma. But now he needs the funds to afford it.
Although the GoFundMe campaign and Reynolds’ kindness has grabbed national attention, Bernardin’s ultimate hope is for Alberta’s government to step in and pay for the drug. Health Minister Tyler Shandro has heard Bernadin’s plea for help, but a meeting him and a follow-up with his assistant on Tuesday have yet to yield results.
“They are reviewing it and seeing what other provinces are doing. The fact that they’re looking at it is promising, but I reiterated that time is of the essence,” she said, adding that if the government follows through, it would set a precedent for other affected families.
Parents of special-needs kids band together against hardships
There aren’t many parenting groups for moms of kids with special needs. Over the last year and a half, Bernadin, Bangel and other moms have found much-needed solidarity through online conversations. Common problems, like the financial difficulties of making their kids’ lives more accessible are just the tip of the iceberg.
Kaysen is currently on another drug, Spinraza. It costs his family annually $375,000 for four operating room visits. However, Spinraza only prolongs his life and it will only get more traumatic to receive the injections as he gets older, Bernadin said. Getting Zolgensma once will cost significantly less over his lifetime, and it will give him the chance to grow up.
Bangel says it’s not uncommon for their group to fundraise for each other when a child’s wellbeing is on the line.
When the group members heard that Bernadin’s family was in trouble, they rushed to support them and continue to reach out to their social circles and Canadian philanthropists to donate.
“People assume because we live in Canada, [health care] and physical therapy is paid for. It’s not,” Bangel said, adding that one mom from the group, whose kid also has SMA1, has put her own fundraising on hold to help Kaysen’s more urgent need.
“We parents have to fight for educational supports, private therapy, and health care dollars so we don’t starve to death, trying to give our kids the best possible life we possibly can. So we’re used to fighting. And we’ve got days to make this happen.”
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