Desperate families waiting to learn if 'miracle drug' covered

CTV News

8 December 2017 - When Karolina Figarski gave birth to her daughter, Olivia, the doctors described her as a healthy baby girl. But before her first birthday, problems started to show.

"I would notice things like she's really struggling to lift a leg on a step, or she would just suddenly buckle and she'd fall so she'd chip her teeth," Figarski said.

A couple years and numerous tests later, Olivia was diagnosed with spinal muscular atrophy, a rare genetic disorder that causes progressive loss of physical strength. It can affect patients' ability to walk, eat or even breathe.

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Michael Wonder

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Michael Wonder