A devastating A-T diagnosis was hard news to bear for the family of Grace Murray, but rural communities have been rallying behind them as they raise funds to find a cure.
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Five-year-old Grace is from Wonnaminta Station, near Packsaddle, NSW.
She loves helping with station work, according to mum Kerry Bourke, riding a four-wheeler and helping muster sheep.
"She loves being outside and loves climbing," Kerry said.
"She is currently doing school of the air but takes any opportunity to go outside."
Grace was diagnosed with Ataxia Telangiectasia - known as A-T or Louis-Bar syndrome - a month before her third birthday.
The disease is rare and incurable, often described as the worst parts of cerebral palsy, muscular dystrophy and cystic fibrosis, and often compounded by cancer and lung disease.
Children are generally born healthy but start to lose balance and coordination from about two years old.
Most children with A-T require regular use of a wheelchair before their teenage years and as time progresses need full time care.
They often have trouble reading and speaking but their minds are unaffected.
If they don't develop cancer, most A-T children are dependent on wheelchairs by ten years old because they cannot control their muscles.
A-T patients usually die from respiratory failure or cancer by their early or mid-twenties, with only rare cases of people living into their 40s.
Grace and her family were raising awareness at Agfair Broken Hill, and raising funds for research to hopefully one day find a cure.
"There's only 40 to 50 children affected by A-T in Australia that are known about," Kerry said.
"When we got diagnosed, I contacted Brash straight away to get more information and support.
"Weeks later we went to Qld for a trial and met all these other families in the same situation.
"It was very confronting and overwhelming because a lot of them were at more advanced stages, but a lot of the other families were doing fundraising and it inspired us to do the same."
Grace's aunties Anne Draper and Tania Thomas were the driving force behind the Broken Hill fundraising effort.
People from Kerry's hometown of Charlton, Vic, all the way to Packsaddle have rallied behind the family, showing the power of rural community spirit.
"Charlton's a rural community where everyone's very supportive and would do anything for you and it's the same up here," Kerry said.
"Little organisations like the Packsaddle Progress Association and Milparinka Gymkhana group have donated money to the cause and have been so supportive."
Donations can be made to Grace's page at brashat.org.au where people can also send messages of support.
So far, the family has raised $158,242 for A-T research.
"Anything we fundraise is put on that page to see that what they donate is going to the cause," Kerry said.
"We want to raise awareness and raise some much-needed funds for research to hopefully one day find a cure."
To donate visit: brashat.org.au/donate.php?fundraiser_id=grace
