BENDIGO resident Anne Draper is rolling up her sleeves to raise money and awareness for a rare disorder close to her heart.
Ms Draper's three-year-old niece, Grace Murray, was diagnosed with Ataxia-telangiectasia (AT) just one month before her third birthday.
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"She's a little bit wobbly, she dribbles a bit, [and] she doesn't focus on you sometimes," Ms Draper said.
"But other than that, you wouldn't know.
"They say that she'll be in a wheelchair by the time she's 10, [and] will be non-verbal in her teenage years and the life expectancy isn't great at the moment."
Not-for-profit foundation BrAshA-T was founded in 2007 by Australians Sean and Krissy Roebig whose two children also have the rare disorder.
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"BrAshA-T is the only organisation that does funding for this Ataxia-telangiectasia," Ms Draper said.
Their children Brady and Ashleigh - whose names also form the first part of the foundation's title - were diagnosed with Ataxia-telangiectasia when they were aged three and two respectively.
BrAshA-T was created to raise money to support research into finding a cure, and to create a network and support system for other families dealing with AT.
Ataxia-telangiectasia is a genetic neurodegenerative disorder which can start to show in early infancy and childhood.
AT is characterised by a number of symptoms including difficulty speaking, drooling, an impaired ability to coordinate certain eye movements, difficulty walking, and an increased risk of developing various types of cancer due to impaired function of the immune system.
Most people with AT will eventually need to use a wheelchair.
The disorder is so rare that Grace is only the 48th child to be diagnosed with AT in Australia.
Grace has to see four or five different doctors and health practitioners in Brisbane to help manage her condition.
Ms Draper said there's also a small community of families who are dealing with AT.
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"They live in a world, I guess, where no one knows about this and no one talks about this so they can get together and can have a normal conversation with someone else who's going through the same journey," she said.
The BrAshA-T foundation is holding a fundraiser at the All Seasons Hotel in Bendigo on Friday, September 9 at 6.30pm.
"The main focus of the night will be talking BrAshA-T," Ms Draper said.
Tickets are being sold to event and all are welcome.
The foundation is asking for donations to raffle or auction and is inviting people to come and support them in their AT fighting efforts.
"We really just want to build awareness about it," Ms Draper said.
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The dedicated aunt said more awareness and funding was needed to research this disorder.
For more information about the foundation and all the work they do, visit this website.
To buy tickets to the fundraiser, contact Anne Draper on 0409 876 224.
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