Little Chloe Saxby knows she can count on her school friends at Woonona East Public to keep her safe.
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On World Rare Disease Day on Monday Chloe’s pals pledged their support publicly by creating a ‘Rainbow for Research’.
They also kicked off donations for a nationwide crowd funding campaign to find a cure for the seven-year-old’s rare disease.
Chloe – one of seven Australians with Vanishing White Matter Disease – sang along with her schoolmates as they performed the Bruno Mars hit Count On Me.
Her parents Nyree and Grant have launched an online campaign to raise $2.6 million for vital research into their youngest daughter’s degenerative, and terminal brain disease.
They know it’s a hefty goal, but as Mrs Saxby said: ‘’It’s a race against time’’ when even a bump to the head, a temperature, a cold or even a sudden fright could kill her.
‘’It’s already been three years since she was diagnosed, and we’ve been told that children generally pass away five to 10 years from the onset of symptoms,’’ she said.
‘’We’ve been in close contact with Professor Elroy-Stein from Tel Aviv University who has just recently had some very promising results in her search for a cure for this disease.
‘’But it might take eight to 10 years for her to get the funding she needs to get to the next stage – we need results sooner than that.
‘’Chloe deserves a chance at life, she deserves a chance to walk next to me at the supermarket, to walk to school. She deserves a life free of pain.’’
Mrs Saxby said Chloe was like any other little girl when a vomiting bug triggered the disease, which had been passed on genetically.
Overnight she lost the use of her legs and has recently started having seizures.
‘’It’s a degenerative disease – she will lose the ability to eat, to talk, to see, to hear – the ability to do everything,’’ Mrs Saxby said.
‘’She won’t even be able to hold her little head up. I can’t bear to think of the amount of pain she will go through.’’
Chloe’s teacher Lucy Zulumovich said she was a resilient, happy little girl, who loved being at school.
‘’Since she came here the whole school has just been fabulous with her,’’ she said.
‘’They’re very young children but they are aware of their responsibilities to ensure she has a safe environment to learn and to play.’’
Donations can be made at SavingChloeSaxby.com
Mrs Saxby said with only seven cases of Vanishing White Matter Disease reported in Australia and 170 worldwide, pharmaceutical companies did not see it as commercially viable to fund research, so it was left up to families affected to raise the funds.
Professor Elroy-Stein, from Tel Aviv University’s department of cell research and immunology, said research into stopping the disease was going well, but required a significant funding boost.
‘’With increased funds for more sophisticated technology and manpower, we will be able to greatly enhance our research and reduce the time required to realise our goal of finding the cure,’’ she said.