That's what keeps her going, as she witnesses Chloe’s daily battle with Vanishing White Matter Disease (VWMD) and as she tirelessly campaigns for funds for research.

On Friday, at the launch of the Great Illawarra Walk, she gave thanks to those in the community – and beyond – who have boosted that campaign.

In particular to Chris and Ruth Lovatt, organisers of the March 2 walk, who for the second year in a row have pledged all proceeds to home-grown research into the condition. 

They hope to raise $150,000 this year, which will further the promising research being carried out at the Illawarra Health and Medical Research Institute (IHMRI) based at the University of Wollongong.

VWM an extremely rare, degenerative and terminal brain disease – one that has robbed Chloe of the ability to walk, and will eventually take her ability to hold her head up, talk, see, hear or eat. There is no treatment, nor cure.

“You never know where the answer is going to come from,” Mrs Saxby said.

“The Illawarra community has helped us raise $1.3 million in three years for research, and that has funded projects in the Netherlands, in Israel and here in the Illawarra.

“For IHMRI to take this research on, and for Chris and Ruth to support it again through the walk, makes us feel very lucky.”

Mrs Saxby has registered for the 40km walk – from Shellharbour to Austinmer – as have the family of a little Mollymook girl, Holly Burns, who also has VWMD.

Both Chloe and Holly, and family members, have provided the Illawarra researchers with skin cells for their tests. And while it’s still early days, there are some promising results, Associate Professor Lezanne Ooi said.

“During the first phase of our research we took the donated skin cells and converted them to stem cells, and in the second phase we made these cells into brain cells,” she said.

“Now we have started the testing of over 1500 different FDA approved drugs in these cells, so we can see the differences in how they respond.

“Basically we are trying to find drugs that protect the cells and reverse the effects we see in VWMD.”

The $100,000 raised from last year’s Great Illawarra walk helped fund two more members for the project, post doctorate researcher Dr Neville Ng and molecular biologist Dr Tracey Berg.

“The walk has been running for 12 years with the aim of helping children in need,” Mr Lovatt said. “This is the second year the funds will be directed to this research to find a cure for VWMD; not just for Chloe but every child worldwide who has this disease.”

Register at www.greatillawarrawalk.com