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‘We don’t know how long we’ve got her for’: First-time parents share anguish as they spend their final moments with their terminally ill baby daughter born with a rare muscle-wasting disease – Daily Mail

A young couple has opened up about their anguish as they spend whatever time they have left with their terminally ill baby daughter.

Sydney parents Johnny and Bethan McElwee were left reeling after their one-year-old girl Aviana was diagnosed with Spinal Muscular Atrophy (SMA) Type 1.

The rare muscle-wasting condition means their daughter will gradually lose the ability to move, swallow and breathe.

‘You just can’t believe something so awful is happening, it’s like a nightmare,’ Mrs McElwee told 9News.

‘When we were told she has SMA, we’d never heard of it… And then we were told “oh it’s the biggest genetic killer [of babies under two]”.’

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