'I need something to move forward,' says Edmonton mom waiting for approval for son's life saving treatment

CTV News

24 July 2020 - The family of a little boy in need of a $3 million treatment says they have no idea whether their pleas for help to the government will be heard in time.

“I’m feeling really emotional and frustrated with the whole process," Lana Bernardin told media on Friday, about three-and-half months after a fundraiser was launched to help the family afford Zolgensma, a one-time gene therapy treatment not currently approved in Canada.

Her son, Kaysen, is one of three toddlers in the capital region diagnosed with spinal muscular atrophy, which affects the muscles used for lung support, swallowing, walking, and head control.

Zolgensma is considered the best option for young spinal muscular atrophy patients and is said to be best administered before the age of two – but is not available to Canadian families and has a price tag of $2.8 million.

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Michael Wonder

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Michael Wonder