An Australian schoolgirl who suffers from a disease so rare and dangerous a bump on the head or the common cold could kill her is in a race against time.
Chloe Saxby, 9, is one of just seven Australians with Vanishing White Matter disease, which affects less than 200 people worldwide.
The young girl’s family began fundraising two years ago to find a cure for the terminal illness, but even the million dollars they have raised is still not enough.
The research that may save Chloe’s life will cost the family much more, and now they are battling the clock as well as the incurable disease – which has a 100 per cent fatality rate.
Chloe Saxby has a rare disease called Vanishing White Matter, a deadly illness that has no cure and a 100 per cent fatality rate
Vanishing White Matter, or VWM, is a rare disease that only affects 172 people world-wide, and there are only seven known cases in Australia
‘Chloe was three-and-a-half and was a perfectly healthy, happy little girl, swimming, running, dancing and riding her bike,’ Chloe’s mother Nyree Saxby told Daily Mail Australia.
Mrs Saxby said Chloe had a vomiting virus, became unsteady on her feet, and her hands would also shake.
A week later her health improved, but something more sinister was on the horizon for Chloe.
‘She went along to her pre-school day and Chloe’s teacher called us with concern as Chloe had been stumbling around, very unsteady on her feet and could not get herself out of the sandpit.
‘She was screaming as if in pain and said her legs felt like jelly – she couldn’t move them properly,’ Mrs Saxby revealed.
Within weeks Chloe had been diagnosed with the incredibly rare and incurable Vanishing White Matter disease.
Chloe goes to her Wollongong school across the road from where she lives and is reliant on her parents Nyree and Grant to help her walk
Since diagnosed in 2012 Chloe has had two fevers from sickness and one bump to the head caused which caused her to be wheel chair bound
Vanishing White Matter, or VWM, is a rare disease that only affects 172 people world-wide, and there are only seven known cases in Australia.
The Saxby’s life quickly changed to a string of doctors and psychologist appointments, trips to the hospital and a desperate hunt for a cure of VWM.
As Chloe was diagnosed at age three she was told she would only have five to ten years to live. She is now nine and may not make it to her 13th birthday.
Although very unwell, the young girl goes to school in Wollongong, south of Sydney, almost every day.
The Saxby’s life quickly changed to a string of doctors and psychologist appointments, trips to the hospital and a desperate hunt for a cure of VWM
Any stresses on her little body, such as high temperature or a bump to the head, can lead to a coma or death
The school is just across the road from her house but she still needs help from her parents Nyree and Grant to get to class every morning.
VWM is a genetic brain disease that deteriorates the central nervous systems.
Any stresses on her little body, such as high temperature or a bump to the head, can lead to a coma or death.
Since being diagnosed in 2012 Chloe has had two fevers from sickness and one bump to the head caused which caused her to be wheelchair-bound.
She now wears a padded cap every day to prevent her from knocking her head again.
At nine she is beginning to have seizures and it is expected to be paralyzed to the point she won’t be able to hold her head up, talk, see or eat
This year Chloe has begun to suffer from seizures, and it is expected that her condition will deteriorate further and she will soon be paralysed.
Further down the track it is unlikely the young girl will be able to hold her head up on her own, talk, eat, or even see.
At nine she is beginning to have seizures and it is expected to be paralyzed to the point she won’t be able to hold her head up, talk, see or eat.
Because this disease is so rare there is no funding to help find a cure leaving the Saxby family to take matters in to their own hands
Because this disease is so rare there is no funding to help find a cure leaving the Saxby family to take matters in to their own hands.
‘To see their kids the same age as Chloe progressing, whereas Chloe is moving backwards in her development is like a knife in my heart every single day,’ Mrs Saxby said.
‘Chloe is such a loving, caring, beautiful little girl inside and out. I can’t help it but I still ask everyday “Why Chloe?” when she has so much to give.I don’t think I’ll ever know the answer,’ Mrs Saxby said.
With only two doctors in the world working towards a cure of the rare disease one has estimated for the research and pre-clinical trials it will cost $2.6 million.
Donate to help save Chloe on this website.