Chloe Saxby is in a race against time. The bubbly seven year old is suffering from Vanishing White Matter Disease, an extremely rare degenerative and terminal brain disease that mostly affects children.
The nature of the disease means that a bump to the head, a temperature, a cold or even a fright could kill Chloe – a reality that her parents have to live with every day.
“This is a disease that doesn’t allow children to be children. Chloe can’t go to the beach on a hot day, play ball with friends, go near anyone with a head cold, run, dance or even walk” explains Chloe’s mother Nyree Saxby.
Chloe hasn’t always been ill. In fact until the age of three the youngster was like any other girl her age. “When Chloe was a toddler, she loved to do all the things that normal kids love to do. Playing at the park, swimming, riding a bike,” Nyree recalls.
But after suffering from a brief vomiting virus Chloe lost the ability to walk.
Initially, doctors had no idea what was wrong and it took eight months to give Chloe a diagnosis.
Vanishing White Matter Disease is extremely rare. Only seven cases have been reported in Australia and just 170 worldwide. This means that pharmaceutical companies do not see it as commercially viable. This leaves the cost of finding a cure in the hands of the Saxby’s, and families like them.
“Crowd funding could literally raise the funds overnight to really make a difference in fast-tracking this life-saving research.
“We can’t stand by while this disease ravages Chloe’s body and watch it take everything from her. Our gorgeous girl is a ray of sunshine and she deserves the right to make her mark on this world,” says Nyree.
Professor Elroy-Stein from the Department of Cell Research and Immunology at Tel Aviv University says that research is going well. However in order to make significant progress, more funds will be needed.
“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 a cure,” he said.
The Saxbys hope that their crowd funding campaign will raise over two million dollars in the next 12 months. The funds will progress research and could bring clinical trials forward in time to save Chloe and other children like her around the world.
“This disease has already robbed Chloe of the ability to walk. If we don’t find the cure in time Chloe will lose the ability to eat, to see, to hear and to speak.
“She will experience a lot of pain and suffering and then she’ll die at a very early age,” says Nyree.
“We’ve got to find this cure before it takes everything from Chloe.”
You can donate to the Saving Chloe Saxby fundraiser Here
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