Rare Disease Day was celebrated in the northern Illawarra with a week-long fund-raiser for four-year-old Chloe Saxby.
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Chloe was diagnosed with Vanishing White Matter Disease in September - a rare brain disorder that has robbed her of her motor skills and slurred her speech.
In January last year she was running, jumping and dancing like any other active child.
But the genetic, degenerative brain disease, which attacks the white matter of the brain, has left her reliant on a walker.
It is expected she will be in a wheelchair within six months. With no cure and possible treatment still years away, the best her parents can do is keep her stable.
Triggers that cause part of the white matter in her brain to turn to liquid are fevers, fright, emotional or physical stress and minor head injuries. Even a small bump to the head could send her into a coma.
Without treatment, Chloe's life expectancy is between five and 10 years.
Northern Stars Swim School at Russell Vale has organised a fund-raising campaign to buy important equipment for Chloe, including a refit of the family vehicle to make it wheelchair friendly.
The fund-raiser, which ends with a fun day on Saturday at the swim school, includes a handprint mural, silent auction, sausage sizzle and jumping castle.
Instructors at Northern Stars, where Chloe learns to swim, have watched her deteriorate over the past year.
"Chloe has just touched our hearts, we're all pretty upset about what's happened to her," says swim teacher Kate Russell.
"We want to raise as much money as we can to help her family and make her life as comfortable as possible."
Rare Disease Day is today.
In Australia 1.2 million people, including 200,000 children, have been diagnosed with a rare condition. Some 80 per cent of those are of a genetic origin.
