When there’s a cause, Edmontonians are there to support. They step up and they don’t shy away from helping where they can.
Today, I’m calling on anyone available to help support a young Edmonton child and his family.
Kaysen is just under two years old and lives with a devastating disease called Spinal Muscular Atrophy. It’s a rare neuromuscular disorder affection voluntary muscles needed for head and neck control, crawling, walking, swallowing and breathing. Kaysen is diagnosed with Type 1 of this disease, the most extreme form of the illness and most children don’t live beyond 2 years old without treatment.
Kaysen’s family is currently raising funds so that they can get him a life alterning gene therapy treatment called Zolgensma. It’s something that can help stop the progression of the disease but the current cost of treatment is an astonishing $2.8-million making it one of the most expensive drugs in the world.
The drug currently isn’t approved through Health Canada, but the FDA in the United States approved it in 2019, according to CBC.
A treatment called Spinraza is given to Kaysen every four months directly into his spine costing $375,000 a year, but the Zolgensma treatment would last him the rest of his life.
Kaysen needs this treatment before his second birthday on July 17th — a mere 10 days away. His family entered him into a lottery that they won, but now they need the funding to get the treatment.
According to CBC, Alberta’s Health Minister Tyler Shandro has agreed to meet with the family to talk about the situation and his office says Kaysen’s case is being reviewed.
How you can help
The family is currently raising money through a GoFundMe page that has already raised nearly $300,000, but Kaysen needs more help to reach the funding needed.