‘I’m having to beg for medication for my daughter to live,’ mother of rare disease patient says

“Any organ in your body that has white blood cells — which is everything, including your skin — has the possibility to be affected,” said Buyaki’s mother, April Mcivor.

Watching her daughter’s illness progress — as she struggles to sleep and breathe, and relies more and more on oxygen — Mcivor is afraid of how long it might take the government to approve the full dose.I am so worried as a parent that the government will approve it too late, when it’s already too late to save her life,” she said.

On Friday, Mcivor spoke about her daughter’s situation at a press conference with Saskatchewan NDP health critic Vicki Mowat. Buyaki had also hoped to be present, but was too ill to attend.

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