Every day is like living on a knife's edge for NSW parents Nyree and Grant Saxby who live in fear that a bump to the head or a cold could rob them of their little girl.
Seven-year-old Chloe has already lost the ability to walk because of a rare degenerative brain disease that will next claim her ability to see, hear, speak and eat before a painful, early death unless a cure is found.
Chloe is one of just seven children in Australia and 170 worldwide with Vanishing White Matter Disease.
Her parents are on a mission to raise $2.6 million for a cure before it's too late.
Chloe was diagnosed at three and a half after coming down with a vomiting virus.
A week later she couldn't walk.
"We thought it was an inner ear infection," Mrs Saxby told AAP.
But a trip to the pediatrician and an MRI indicated it was something much worse.
Her brain scans were sent to a professor in the Netherlands and VWM was confirmed eight months later.
The condition is genetic - Mrs Saxby carries a severe gene mutation while her husband carries a mild mutation.
The chances of a child being born with the disease in Australia are one in 3.5 million.
But in one bit of good news for the family, their eldest daughter Madeleine has tested negative both to having the disease and being a carrier.
It's not the life the Saxbys pictured - enjoying caravanning with friends and days at the beach.
"This is absolute hell, you never picture this for yourself," Mrs Saxby said.
"It has changed our lives completely, given our eldest daughter Madeleine such a different life."
They must watch Chloe constantly to make sure she doesn't hurt herself, get even a minor cold or become too stressed.
"Every second of our lives, it's like being on a knife's edge. We walk on glass every day," Mrs Saxby said.
"It's extremely painful and not a nice outcome for Chloe.
"She'll be very young. Chloe has one of the severe mutations and with her diagnosis at three and a half her outlook, if we don't find a cure, is not good."
But she is confident a cure is close and with funding it could be ready in time to save Chloe's life.
Israeli professor Orna Elroy-Stein has been working on a cure with promising results.
Pre-clinical trials are the next step.
"I fully believe she will find the cure to stop this disease," Mrs Saxby said.
"But without this money it may be eight to 10 years away, and Chloe doesn't have eight to 10 years."
After a year of running marathons, hosting barbecues and selling chocolates to raise more than $50,000 the Saxbys have turned to crowd funding.
Their initial goal is to raise $840,000 but ultimately they need $2.6 million.
"If we can, I hope to God we save Chloe, and I hope to God that we save enough money.
"But if something happens that we don't, at least we've contributed to saving the lives of other children."
To donate, visit SavingChloeSaxby.com.au.
Share
