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EDMONTON – It was July 17th and Kaysen Martin’s second birthday was over.
A day that meant more than just adding another candle to the cake. It was also the deadline for Kaysen’s family to raise $ 2.8 million for a one-time gene therapy treatment to fight a rare disease called type 1 spinal muscular atrophy (SMA 1).
Fast forward four and a half months.
An “angel donor” has given Kaysen the remaining $ 2 million needed to receive the therapeutic drug Zolgensma to treat the disease affecting the muscles used for lung support, swallowing and scanning.
“It was a huge sigh of relief,” Kaysen’s mom, Lana Bernardin, told CTV News Edmonton. “It took longer and, you know, it was complicated, but at the end of the day, here we are, it’s done, (the drug) is in him and that’s all that matters.”
His family raised hundreds of thousands of dollars before the July 17 deadline thanks to donations from the community and celebrities.
Canadian actor Ryan Reynolds donated $ 5,000 to the cause while Edmonton actor Nathan Fillion made a request for help on Twitter.
“To be able to come forward today and say this happened, we made it happen as a community is amazing,” Bernardin said.
Which means adding more candles to Kaysen’s birthday cakes for years to come.
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