Inside young family's heartbreaking struggle to save their daughter Sasha from a cruel genetic condition so rare it doesn't even have a name

A young Australian family suspected by their daughter Sasha's first birthday that something wasn't quite right, but they were shocked when they eventually found out what it was.

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Quairading ,Western Australia ,Australia ,Perth ,David Lipworth ,Evie Whipps ,Nadine Lipworth , ,Watching Sasha ,Professor Sue Fletcher ,