Nyree & Grant Saxby, the Australian parents of seven year old Chloe who is facing a fearful future from an extremely rare, terminal brain disease, were delighted to receive support from Richard Branson on Twitter, encouraging his followers to help support Chloe fight Vanishing White Matter Disease. https://twitter.com/
In a story of hope and inspiration, the Saxby’s are taking matters into their own hands to raise two million dollars to fast track the research required to cure their daughter. “The Branson tweet has certainly given our campaign a boost” said Mrs Saxby. “With only seven cases reported in Australia and 170 worldwide, pharmaceutical companies don’t see it as commercially viable and it is therefore left up to the affected families to raise the funds for research to save our children” she said.
Determined to make a difference, Mr and Mrs Saxby have turned to social media with a video about saving their daughter – and have managed to raise over $200k in under three months. With community support, the Saving Chloe Saxby Rainbow logo is spreading around the World. “Our campaign is reaching all corners of the globe. It is not only raising life saving funds but spreading awareness. Within a week I was contacted by families in the UK, Brazil & Thailand, all who had children newly diagnosed with VWM Disease, needing support and wanting to join our fight for the cure”. Mrs Saxby said
The Saving Chloe Saxby Campaign has also attracted the support of a number of personalities including Olympian Swimmers Emma & David McKeon, who were so touched by Chloe’s smile when they swam with her, they donated generously to the Saving Chloe Saxby campaign.
Until just before her fourth birthday Chloe was running around, healthy and happy. She had just started dance lessons and was loving them. Then, overnight, she lost the use of her legs. Chloe’s parents eventually received the heart-breaking diagnosis of Vanishing White Matter Disease, a condition that makes Chloe so fragile that a bump to the head, a temperature, a cold, or even a fright could kill her. Now seven, Chloe is confined to a wheelchair, this disease will next take away her ability to talk, see, hear and eat. She will experience a lot of pain, suffering and die at an early age, if the cure is not found in time.
There is, however, hope for Chloe and close to 200 children like her worldwide. Promising research is underway to stop this disease in its tracks and there have been recent breakthroughs but progress is hampered by a lack of funding.
“Whilst we are doing everything in our might to save Chloe, we are determined to leave a legacy for future generations, so the next time parents are told the soul-destroying news that their child has VWM, there will be a cure”.
Call to Action/Crowd Funding Page for donations: http://www.savingchloesaxby.
About Vanishing White Matter Disease
- Vanishing White Matter Disease (VWM) is an extremely rare and terminal brain disease that affects mostly young children.
- Symptoms generally appear between the ages of two and six years where the child was previously developing normally.
- This genetic disease belongs to a family of conditions called the Leukodystrophies and causes the deterioration of the central nervous systems white matter (myelin). In doing so, it permanently affects transmission of brain signals to the rest of the body.
- The severity of the disease is strongly correlated to age of onset. It is degenerative and is unusual in that periods of rapid and severe deterioration can be caused by minor head trauma, high temperatures (above 38 degrees), viruses and stress. Each of these triggers can lead to loss of motor functions, coma and death.
- Very few sufferers survive more than five to ten years after disease onset.
- There are 7 known cases of VWM disease in Australia. We are also in contact with other VWM families around the world, collaborating together towards the common goal of finding the cure in our children’s lifetime.
- Chloe’s Neurologist at Sydney Children’s hospital, Dr Hugo Sampaio is available for interviews
The SavingChloeSaxby.com campaign is a worldwide effort that supports the research project to find a cure for VWM disease conducted by Prof Orna Elroy-Stein at the University of Tel Aviv. The university is recognised as a world leader in the study of brain science and neurodegenerative disease. Every dollar raised goes to the cure to benefit all 172 children living with VWM disease around the world.