16,000 chip in for toddler’s life-changing gene-therapy treatment
EDMONTON -- The countdown to $3 million is on.
Kaysen Martin, a 23-month-old toddler, turns two years old on July 17.
As of Friday afternoon, about 16,000 people had chipped in to make his birthday memorable: Kaysen’s birthday is also the deadline for his family to raise the money needed for a gene therapy to treat Spinal Muscular Atrophy Type 1 (SMA 1).
The disease affects the muscles used for lung support, swallowing, and crawling.
His parents say the best of the toddler’s few options is a one-time $2.8 million gene-therapy drug called Zolgensma, which is not currently funded in Canada.
More than $610,000 has been raised by the family – but twice as much is needed for them to be able to afford the drug.
"I have not thought an ounce about celebrating that birthday with him," Lana Bernardin told CTV News Edmonton.
- READ MORE: Family of Edmonton toddler with rare disease asking for $2.8M drug to be funded by Alberta
The cause most recently saw a call of support from fellow Albertan Nathan Fillion, an actor known for his roles in Firefly, Castle, and The Rookie.
"Hey. Here’s one of those things where people need your help," he wrote to his Twitter followers.
"Just a baby. Just a dollar. Just a retweet. Let’s see what we can do."
Ryan Reynolds donated $5,000 to the campaign, inspiring local entertainment to step up, too.
"We thought if the A-listers could step up, then the D-listers could step up and try to help this slow ball get some traction," explained The Bear’s Yukon Jack, announcing a $5,000 donation from The Bear’s Children Fund on Friday.
However, Bernardin says she doesn't feel the task should be up to her family, about about 15 other families she knows are dealing with the condition.
"I feel like the government should step up. We shouldn't have to be doing this."
She added Alberta's health minister, Tyler Shandro, took her call, but made no committment while offering no "hard no" either.
Shandro's office did not respond to CTV News Edmonton's request for comment.
In the meantime, Kaysen's family remains buoyed by the support they've seen, and which they hope is still to come.
"I will remain optimistic for as long as I humanly, possibly can hold on."
With files from CTV News Edmonton's Erin Bezovie and Bill Fortier