The parents of a Queensland girl with a rare brain disease are joining forces with international families in a bid to find a cure. There are just 30 known cases of the disease globally. But through sheer determination they've have rallied an army of supporters and scientists to their cause.
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00:00Six-year-old Tallulah Moon has just the right mix of sweetness and sass.
00:07Do I have to make my own coffee?
00:09You need a pen.
00:10Oh, alright.
00:11Her parents feared they'd never reach this point.
00:13In 2020, their bubbly toddler, who'd been hitting all her milestones, suddenly stopped.
00:18And within about a four-week period, she couldn't hold her head up.
00:23She was on the ground, she couldn't stand, she couldn't roll over.
00:26Genome mapping revealed the cause of her decline.
00:29Hereditary spastic paraplegia type 56, which attacks the brain's nerve cells.
00:34A disease so rare, they don't know how much time they have.
00:38We can't really see what the future holds for Tallulah, because there isn't any research done on it.
00:45That's what spurred the Sunshine Coast family into action.
00:49Since their daughter's diagnosis, they've helped raise millions towards finding a cure
00:54and have connected with the handful of other affected families from around the globe.
00:59Including the Venia family from Romania, who recently came to Australia to meet them.
01:05Young Mario and Medea also have the disease.
01:08Our journey was hard and very emotional, but today we have hope.
01:13Thanks to you, thanks to the scientists.
01:15Researchers are developing a gene therapy to stop or even reverse the progressive disease.
01:21They're now on the brink of a clinical trial.
01:24It just, it both breaks my heart to see that, but at the same time go like,
01:28OK, this is the reason why we need to move at speed and why we need to do this now.
01:33As her parents continue to fight for a cure, Tallulah joined her big brother at school this year.
01:39In the first week, the feedback we got from the teachers was that,
01:43no, look, she wasn't having any trouble fitting in.
01:46She was more like Taylor Swift and they had to sort of push the fans away from Tallulah to give her space.
01:52Or that one. Or this one. I'll put it here.
01:56.