The team from the Illawarra Health and Medical Research Institute (IHMRI) believe new developments in stem cell research will help them better understand, and so treat, Vanishing White Matter Disease (VWMD).

Nine-year-old Chloe is one of just seven Australian children – and 170 worldwide – battling the disease which leads to deterioration of the central nervous system’s white matter.

IHMRI neuroscientist, and research group leader, Dr Lezanne Ooi, said researchers would grow a replica of the disease cells in a test tube, to enable approved drugs to be tested on them.

“Chloe is donating some skill cells ... and in the lab we can convert those skin cells to something very similar to stem cells,” Dr Ooi said.

“Stem cells can become almost any cell in the body, so we can in turn generate those cells into something similar to the cells found in the nervous system.

“Then we can try to understand what it is about those cells that are particularly vulnerable, and use those cells to try and identify potential treatments that can protect those cells.”

The research team – which includes molecular biologist Associate Professor Justin Yerbury – will use new technology recently acquired by IHMRI in this Australian-first research.

Research into the rare condition has so far only been undertaken in Israel and The Netherlands.

In 2016 Chloe’s parents, Nyree and Grant, launched the Saving Chloe Saxby campaign to raise $2.6 million to help fund those overseas research projects.

People in the region – and further afield – have rallied, with more than $1 million raised so far through a variety of fundraisers.

Now the Saxby’s are thrilled to be able to channel some funds into the homegrown research.

“I spent so long emailing researchers around Australia and kept coming up against closed doors – no-one wanted to look into VWMD,” Mrs Saxby said. “So to have it happen on our doorstep – at this world-class facility at the University of Wollongong – is just amazing.”

An infection, bump to the head or even extreme fright can cause children with VWMD to deteriorate – or can even lead to their death.  Life expectancy is likely between five and 10 years from the onset of the disease. Chloe was diagnosed six years ago.

“There’s a lot of tough days but when we see the community support – we know we’re definitely reaching people,” Mrs Saxby said.

The next fundraiser will be at the Great Illawarra Walk on March 17 and 18, where they hope to raise $150,000 for the IHMRI project.

To register go to www.greatillawarrawalk.com or to donate directly to the campaign visit www.savingchloesaxby.com