'It's magic': families, advocates celebrate lifesaving drug announcement

Sydney Morning Herald

7 May 2018 - It’s not a cure, but for Bethan McElwee the drug Spinraza is the difference between her daughter Aviana, who is turning two in July, not surviving past her first birthday and “thriving”.

"By the time Aviana started on the drug, she couldn't hold up her head and was only able to move her fingers and her eyes," said Mrs McElwee.

Now, almost a year past the usual life expectancy for those born with the muscle-wasting disease spinal muscular atrophy, Aviana can sit unsupported, roll around to reach her toys and is gaining muscle every day.

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Michael Wonder

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Michael Wonder