An Edmonton family is celebrating an early Christmas miracle Thursday.
Two-year-old Kaysen Martin has received the life-saving drug Zolgensma thanks to donations from around the world and an extraordinary gift from an anonymous donor.
“We did it! You did it! We all as a community did it! Right now Kaysen is receiving Zolgensma,” the family shared in a post on Instagram on Thursday.
“We are so blessed that along with all the funds raised, an angel donor donated the rest of the money so that we could privately purchase Zolgensma for our sweet Kaysen!
“We are still in such a state of shock as every single day that passed after Kaysen’s second birthday we were slowly losing all hope. Well just as all hope was lost, an angel swooped upon us and made all our dreams and hopes come true for Kaysen.
“We are forever grateful and so thankful for everyone who stood by our side. Miracles do happen.”
Kaysen was diagnosed with spinal muscular atrophy Type 1 (SMA 1) when he was eight months old. It’s a progressive motor neuron disease that causes his muscles to weaken over time. Most children with SMA 1 do not live to see their second birthdays.
Kaysen has been taking Spinraza treatments every four months. But Spinraza is not a cure and it costs $375,000 a year.
His family asked Alberta Health to pay for a new one-time gene-therapy treatment called Zolgensma, which costs $2.8 million.
Kaysen’s Quest inspired Edmontonians, Albertans, Canadians — even celebrities like actor Ryan Reynolds — to donate.
A gofundme for Kaysen had raised over $1.4 million.
“The difference between the gene therapy and what he’s on now is that this gene therapy actually… replaces that dysfunctional gene that causes this neuromuscular disorder,” Durhane Wong-Rieger said on July 3.
Wong-Rieger is president and CEO of the Canadian Organization for Rare Disorders.
— More to come…
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