A group of Edmonton moms is raising money for a toddler in need of an expensive, but life-saving, drug therapy treatment.
The group of about 30 moms — each with a special needs child — is part of a massive bottle drive with the proceeds going to help Kaysen Martin.
“To be with such a strong group of women that come together for one little boy is amazing,” bottle drive organizer Alanna Clark said.
In about a week, she said they’ve raised roughly $10,000 through their bottle drive.
“We know at some point or another there’s a chance one of our kids will need it — we know we’re all behind each other,” Clark said.
“She would do it for our kids if we didn’t do it for hers,” group member Desiree Hogan said.
Kaysen needs a life-saving gene therapy drug to permanently treat his spinal muscular atropy type 1.
The drug — Zolgensma — costs $2.8 million and has to be administered before his second birthday on July 17.
It’s also not approved in Canada yet, so the family has been lobbying the province to help pay for it.
“I’m trying really hard to stay optimistic. I know we are still far away from our goal,” Kaysen’s mom Lana Bernardin said Friday.
On Friday, the health minister’s press secretary told Global News that staff have been in touch with the family regularly, but said it’s a complex case.
“”We realize the family wants a decision urgently, and that the drug needs to be provided as soon as possible if it’s going to be provided at all,” Steve Buick said in a statement.
The province has assured the family “Kaysen’s second birthday next week does not limit our options,” the statement added.
“The ‘Special Access Program’ that authorizes use of the drug for him is not bound by the same clinical indication as the submission for regular approval.”
“I’m so grateful and thankful that at least it’s not a no,” Bernardin said.
In the meantime, the GoFundMe for Kaysen surpassed $700,000 as of Saturday afternoon.
“It’s amazing how one little boy can just touch everybody’s heart,” Clark said.
“We can help out one of our own who wouldn’t make it without everybody’s support,” Hogan said.
To donate to the bottle drive, email bottles@savek.ca
On Monday, a commercial truck will be available for any restaurants that would like to donate.