Imagine being told your child had a rare and incurable genetic disease. The overwhelming despair and helplessness you would feel as you begin to grieve a child that is still living.

Then imagine being told there was a potential therapy for the condition but your child may not have access to it. Hope mixed with frustration and desperation as you anxiously await a glimmer of good news from the other side of the world.

For most of us, this is just a hypothetical. A parent's worst nightmare - literally.

But for one Victorian family, this has been their reality since being told their youngest child has infantile Batten or CLN1 disease.

Up until that fateful day in April, the Hunters, of Ballarat, were your typical family - working parents (Nikita and Harley), three young kids (Harry, Paddy and Isla), two dogs (Teddy and George) - going about their day-to-day business with little fuss and a dream of building their own home.

Now their focus has shifted to their little girl and doing everything in their power to help her get selected for a world-first gene therapy clinical trial for CLN1 disease.

Texas-based Taysha Gene Therapies is behind the groundbreaking research. It is currently seeking FDA approval for an investigative new drug application that would allow them to run a trial.

"To think that Isla could be part of something like this, which not only has the potential to help her but other children with CLN1 is amazing," Nikita told The Courier.

But it's a race against the clock.

"Time is neurons. The further a patient has progressed, those neurons that have been lost generally can't be regenerated," Batten Disease Support and Research Association Australia's Dr Ineka Whiteman explained.

"Treatment will potentially only halt the disease or slow its progression from the point that the therapy starts."

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 have expected reach out to both Harley and I to send their love, regards and thoughts," Nikita said.

"We have had donations and fundraisers in our beautiful daughter's name so from the very bottom of our hearts, thank you to everyone who has made a difference and shown us what community love and spirit is really about."

It was a similar story in Kulin, Western Australia, recently when a farmer was diagnosed with a devastating illness and the small community rallied together to show its support and help raise funds for more research.

And in New South Wales last month when the community of Orange united to support the family of a schoolboy who died while trying to help trying to help a couple injured in a two-car crash.

Whether it's a rare disease, road trauma or even a global pandemic, it's comforting to know that we've got each others backs when times get tough.

Community spirit truly is a lifeline to regional and rural Australians in times of hardship. Here's hoping, for the Hunters, that spirit extends overseas and lsla receives the life-changing therapy she deserves.

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