$120K Coverage for Rare Disease, Best Christmas Present Ever

An Ottowa family is overjoyed after some good news.
They have just been informed that their insurance company is offering to cover $120,000 worth of treatment to cover their son’s rare degenerative disease. The drug Spinraza will be treating 8-year-old Mason’s spinal muscular dystrophy (SMA).

SMA affects 1 in 10,000 people and causes mild to severe muscle weakness and degeneration. The severity of the cases vary according to age. To learn more about SMA, click here.

Up to this point, Spinraza had only been approved by Health Canada in June.

Mason had been suffering from this degenerative disease since he was 2, and it has challenged his every day mobility tasks. The most difficult part is trying to catch up with his faster friends on his scooter.

After his family was educated on Spinraza, they applied to their insurance company and then waited for the Ontario Health Insurance Plan to make their decision. After some waiting, they received the good news that Sun Life would be covering the drug. It was the best Christmas present they could have ever asked for.

The Mason family was incredibly cheerful and shared their story on social media, which they thought might have played a role in their final approval. Now that Mason has been approved, the family has made it their life long goal to ensure other children like him get approved for the life-changing drug. That’s why they established Cure SMA Canada.

“All these kids are out there that are worse off than him that need this drug,” Jenna Stewart said to CTV News. “I’m hoping it can make me run and keep up with my friends.”

About one in 40 people have the SMA gene that can be passed down genetically. There is a one-in-four chance that the disease will be carried down if both parents have it.

Mason is excited and ready to begin the treatment that will change his life.


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