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The girl has been receiving the drug therapy since 2019 at a cost of about $1 million a year. 

She is the only person in the province, and one of 13 children in Canada, who has the genetic and fatal disorder that results in multiple seizures a day.

The statement says clinical evidence shows that once a patient has declined in motor skills and language functions by a certain amount, the drug is no longer a benefit in slowing the progression of the disease. 

Osborne says a Canada Drug Agency review of the latest research on the girl's disease found there was no evidence to support its continuing drug coverage, given the advanced stage of her condition. 

This report by ºÃÉ«tvwas first published June 18, 2025.