In January 2012, Chloe Saxby was running around enjoying her childhood like any other 3 year old. Chloe loves Minnie Mouse and Tinkerbell and adores her older sister Madeleine, aspiring to do all the fun activities that her sister enjoys… like dancing, netball and surf club.
Early last year it became evident that Chloe was struggling with her physical abilities.
After falling ill from a virus, Chloe was finding it difficult to balance, walk or stand up without support. After many agonising months of blood tests and MRI scans of her brain, Chloe has been diagnosed with Vanishing White Matter Disease of the brain, a form of Leukodystrophy. This degenerative brain disease is extremely rare and serious and causes deterioration of the central nervous system’s white matter, which consists of nerve fibres covered by myelin. When the myelin sheath is damaged or disappears, the conduction of impulses along the nerve fibres slow down or fail completely and the brain functions become hampered or lost. As a result, Chloe’s basic motor skills are deteriorating, including her balance, movement and speech.
There is no cure for Vanishing White Matter Disease, and as it is so rare and unknown in Australia, Chloe’s MRI brain scans and blood tests had to be sent to a world renowned specialist in the Netherlands for diagnosis.
As Chloe is now only able to walk with a paediatric walker and cannot go up or down stairs, her family has had to sell their home in Woonona and relocate to a flat block and will now look at constructing a purpose built, wheelchair accessible home.
“The next thing on the agenda was a car with a hydraulic lift for Chloe, and the approximate cost for a conversion with a hydraulic lift is around the 40,000 mark” said Chloe’s mum, Nyree.
“My husband, Grant was helping Parameadows School with some concreting a few years ago, and had met Paul Cotterill, who was also involved with the Austinmer Otters”, said Nyree, “When Paul recently heard about Chloe, he approached us to return the favour.”
The Austinmer Otters Winter Swimming Club has raised over $5,000 towards the hydraulic car conversion, with another $10,000 coming from the Thirroul-Austinmer Lions Club.
“We were able to raise most of the money through Northern Stars where Chloe swims, but we were short about $15 grand, so the Otters and Lions came through for us.”
The Austinmer Otters were able to raise most of their funds through the members and guests at the Thirroul Bowling Club and the regular fundraising events held there on Tuesday and Thursday evenings.”
“When we went for the final diagnosis in September with the neurologist and social worker from Sydney Children’s Hospital, they said if there is any good to come out of this, it’s where you live. They said, you have the best community down there, the community is amazing – you will not find better when something like this happens. They really rally around you and help out.”
You can donate to Chloe’s appeal, to help the Saxbys and their brave little girl.
[contact]Grant and Nyree Saxby[/contact]
[phone]0412 227 065[/phone]
[source_author]Elaina De Smuszko[/source_author]