Chloe Saxby receives support from the Illawarra Community Foundation
Chloe is a beautiful 8 year old girl who was diagnosed four years ago with an extremely rare and degenerative brain disease for which there is no cure or treatment currently available.
In January 2012, Chloe was running around, riding her bike, dancing, swimming and enjoying her childhood just like other 3 and a half year old girl’s. Chloe loves rainbows, fairies and Paw Patrol and adores her big sister Madeleine, aspiring to do all the fun activities that Mads enjoys like swimming, dancing and playing tennis and netball. Sadly, we realise now that these aspirations are no longer possible due to her diagnosis of Vanishing Whiter Matter Disease (VWM), a form of Leukodystrophy.
VWM is a devastating genetic, terminal brain disease that affects mostly children, with most patients diagnosed between the ages of 2 and 6 years old. In a very short period of time, it causes the inability to walk, talk and eat as well as blindness, deafness, loss of motor skills, mental retardation, spasticity, seizures, and coma and is followed by death often before reaching teenage years. Even a small bump to the head, a fever or infection could end Chloe’s life. There are only 7 known cases in Australia and 172 living worldwide.
“To hear the Neurologist confirm that our little girl had an incurable brain disease was earth shattering. Our Chloe had gone from being able to walk, run, dance and ride a bike, to not being able to stand or walk on her own within a one week period. Her little hands shake and finally we knew the reason why,” says Chloe’s mother Nyree.
Nyree submitted an application for funding to the Illawarra Community Foundation from funds raised during the i98FM Illawarra Convoy. The family will now be supported with food vouchers and a pharmacy account to help them during their ongoing fight to fund the research required to find a cure.
“The focus now is on raising as much money as we possibly can to fund research to Find a Cure for VWM, as that’s the only way we can save Chloe and the other VWM children around the world. We have just launched a Raffle with incredible prizes including a Business Class trip to Fiji, plus a Maldives holiday and flights to Hawaii – please see: https://www.rafflelink.com.au/scsr2017
To find out more about Chloe or to donate to the charitable foundation, Chloe Saxby and Vanishing White Matter Disease Incorporated, go to: http://www.savingchloesaxby.com