EDMONTON -- It was July 17 and Kaysen Martin’s second birthday had come and gone.
A day that had more significance 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 combat a rare disease called Spinal Muscular Atrophy Type 1 (SMA 1).
Fast forward four-and-a-half months.
An “angel donor” donated the remaining $2 million Kaysen needed to receive the therapy drug Zolgensma to treat the disease that affects the muscles used for lung support, swallowing, and crawling.
“It was a huge sigh of relief,” Kaysen’s mom, Lana Bernardin, told CTV News Edmonton. “It did take longer and, you know, it was complicated, but at the end of the day, we’re here, 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 community, and celebrity, donations.
Canadian actor Ryan Reynolds donated $5,000 to the cause while Edmonton-born actor Nathan Fillion put out a call for help on Twitter.
“To be able to come forward today and say that this has happened, we made it happen as a community is like amazing,” said Bernardin.
Which means adding more candles on Kaysen’s birthday cakes for years to come.
