More than $500,000 has been raised for the Saving Chloe Saxby campaign since its launch one year ago, but it’s become a race against time to reach the end goal.
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For 18 months the Woonona girl’s rare condition had ‘’plateaued’’ according to her mother Nyree, but in the last two months there’s been a deterioration with Chloe suffering 35 seizures.
Any one of those could have been fatal for the eight-year-old, who is one of seven Australian children – and 170 worldwide – diagnosed with a degenerative brain illness called Vanishing White Matter Disease (VWM).
‘’For 18 months she’s had no seizures, no bumps to the head, no major sickness – all the things that cause her to deteriorate,’’ Mrs Saxby said.
‘’And now 35 seizures since just before Christmas and it’s taken a toll on her body. She can only manage two hours at school each day as she’s so exhausted and has lost a lot of strength. We’re hoping it’s due to medication, not the disease which is known to feature plateaus ahead of deterioration.’’
On Rare Disease Day on Tuesday, Nyree and Grant Saxby can see how far they’ve come with the campaign which they launched on the same day last year.
With no government funding available, they took matters into their own hands to raise $2.6 million to fast-track the research required to cure their daughter.
Thanks to the support of the Illawarra community – and beyond – $550,000 has been raised. The campaign has also attracted high-profile support, from the likes of Richard Branson and Hamish and Andy.
‘’Professor Orna Elroy-Stein at Tel-Aviv University in Israel has had a recent breakthrough in the research to cure VWM, identifying several drugs that cured affected cells in lab experiments,’’ Mrs Saxby said.
‘’Orna says the funds we have raised are a ‘game-changer’. With this funding, the hope of bringing this research to clinical trials to save Chloe and other children is within reach.
“Without these trials, Chloe won’t be with us within the next five years, 10 years at most.’’
Mrs Saxby said the “monster of a disease’’ had robbed Chloe of the ability to walk; eventually it would paralyse her little body so that she wouldn’t be able to hold her head up, talk, see, hear or eat.
‘’The hardest part as a parent is to watch my precious little girl die in front of my eyes,‘’ she said. ‘’I refuse to let this happen.’’
To help out, visit www.savingchloesaxby.com