More families are hoping a one-time treatment option for a rare condition will be made available in Alberta – while their young children still have time to see its benefits.
READ MORE: Family of Edmonton toddler with rare disease asking for $2.8M drug to be funded by Alberta
"Seeing that there is a treatment that could potentially stop it in its tracks, and not being able to afford it... It was heartbreaking," mother Amanda Hanki said. Novartis has offered up to 100 free doses of the drug in 2020 throughout the world through a program families apply for and are selected via random lottery.Reign, a four-year-old whose condition now requires round-the-clock breathing assistance and a feeding tube, does not qualify.
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