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Voice of Real Australia is a regular ACM newsletter, which has reporters in every state and territory. Sign up here to receive it by email, or here to forward it to a friend. Imagine being told that your child has a rare and incurable genetic disease. The overwhelming hopelessness and helplessness you would feel when you began to mourn a child who was still alive. Then imagine that you are told that there is a potential treatment for the disease, but that your child may not have access to it. Hope mixed with frustration and despair as you anxiously await a glimmer of good news from across the world. For most of us, that’s just a guess. A parent’s worst nightmare – literally. But for a Victorian family, this is their reality since they were told their youngest child had Infantile Batten Disease or CLN1. Until that fateful day in April, the Hunters, from Ballarat, were your typical family – working parents (Nikita and Harley), three young children (Harry, Paddy and Isla), two dogs (Teddy and George) – go about their business. – day-to-day business with little fuss and a dream of building their own house. Now their attention has shifted to their baby girl and doing everything in their power to help her be selected for a gene therapy clinical trial for the world’s first time for CLN1 disease. Texas-based Taysha Gene Therapies is behind this groundbreaking research. He is currently seeking FDA approval for an investigative application for a new drug that would allow him to conduct a trial. “To think that Isla could be a part of something like this, which has the potential to not only help her, but other children with CLN1 as well, is amazing,” Nikita told The Courier. But it’s a race against time. “Time is neurons. The more a patient progresses, the more neurons that have been lost usually cannot be regenerated,” explained Dr Ineka Whiteman of Batten Disease Support and Research Association Australia. “Treatment will only stop the disease or slow its progression from the time therapy begins.” Despite their heartache, the Hunters say they have been overwhelmed by the love and support of the community – a response often seen and felt across regional and rural Australia when tragedy strikes. “I’ve had people I don’t know hug me, cry with me, people I wouldn’t expect to have reached out to both Harley and I to send their love, greetings and greetings. thoughts, ”Nikita said. “We have had donations and fundraisers on behalf of our beautiful daughter, so from the bottom of our hearts, thank you to everyone who made a difference and showed us what the love and spirit of the community.” It was a similar story in Kulin, Western Australia, recently when a farmer was diagnosed with a devastating disease and the small community rallied to show support and help raise funds for more research. And in New South Wales last month, when the Orange community came together to support the family of a schoolboy who died as he tried to help a couple injured in a car crash. Whether it’s a rare disease, a road trauma, or even a global pandemic, it’s heartwarming to know that we support each other when times get tough. Community spirit is truly a lifeline for regional and rural Australians in times of difficulty. Hoping, for the Hunters, that spirit spreads overseas and Isla gets the life-changing therapy she deserves. If you want to filter all the latest information until a late afternoon read, why not sign up for The Informer newsletter?

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THE REAL AUSTRALIA

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