Inside young family's heartbreaking struggle to save their daughter Sasha from ... trends now
A young 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.
After years of heartbreak and diagnoses of global developmental delay, ADHD and autism, last month, Nadine and David Lipworth finally found out an extremely rare genetic mutation was robbing Sasha of almost everything she'd learned since birth.
The disease causes her to have seizures and is so rare it doesn't even have a name - it's just referred to by the affected gene, SLC6A1.
'(It is) the cruellest thing that is imaginable to happen to a child, because from the age of four, instead of continuing to progress, she started going backwards,' Mr Lipworth told The Project on Tuesday.
'(On) her fourth birthday she was singing happy birthday and blowing out the candles and just an average four-year-old, and then a couple of months later that was all stolen from her,' Ms Lipworth said.
Sasha suffers from a genetic mutation that's robbing her of almost everything she has learned since birth
David and Nadine Lipworth (pictured) have promised their daughter Sasha they won't give up
'She had just slipped away from us and it was fast. It wasn't years. It was months.'
By the age of five, Sasha was back in nappies and was no longer able to talk, play or do basic tasks.
When she had her seventh birthday in March, she struggled to blow out a single candle.
'It's so wrong. Children are supposed to progress. Not regress,' Mr Lipworth said.
'Watching Sasha go through a process that is exactly like dementia is something that is truly torture to watch. It's cruel when it happens to an older person. But it's unfathomable when it happens to a child.'
While there is a drug called Ravicti which can stop Sasha's regression, it's one of the most expensive medications in the world, costing between
