When Holly Burns was just 19 months old, an MRI scan which showed "her brain was glowing white" sent specialists back to the books for an answer.
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It wasn't long before the little Mollymook girl was diagnosed with a rare and terminal brain disease known as Vanishing White Matter Disease.
And despite there being only seven known cases in Australia - and 172 worldwide - Holly's parents Amanda and Daniel were soon able to find support from a Woonona couple facing the same heartache.
Nyree and Grant Saxby's four-year-long campaign to find a cure for VWMD - and save their daughter Chloe as well as other children - has gained international publicity.
And now - thanks to funds raised by the Illawarra community for research - there is finally a breakthrough.
Researchers at the Illawarra Health and Medical Research Institute have identified FDA-approved drugs that work to protect VWMD cells in the laboratory.
The team, led by Associate Professor Lezanne Ooi, have shared the data with Chloe's neurologist, who is now assessing her medications.
"We're at a critical time in the research phase," Prof Ooi said.
"We now have some really promising leads as we have found some potential drugs that can protect against the VWMD cells in the dish.
"Over the next year we will continue this work because we know from the data so far, there's a couple of drugs that could also be protective that could be used in combination as a treatment."
For the Saxby's it's an exciting time.
"We're very hopeful the drugs could have a therapeutic benefit on Chloe's cells and help slow the progression of the disease or at least slow it down until a cure can be found," Mrs Saxby said.
The research also brings hope to Holly's family.
"When your doctor says 'take your daughter home and enjoy her' because they don't know how long you've got with her, it's heartbreaking," Mrs Burns said.
"When you know that a bump to the head, heat or a fright could all trigger her condition and cause her to deteriorate. When the unknown is scary, but what you do know is just as scary - it's hard to live with.
"But this makes me feel really hopeful. We will be speaking to our neurologist and we're excited about what it might mean for Holly, it's an absolute dream."
The research announcement came at the launch of The Great Illawarra Walk which will again in 2020 hand over 100 per cent of proceeds to the IHMRI research.
The walk - now in its 13th year - has raised more than $830,000 for children in need throughout the Illawarra. Since 2018, the fundraiser has supported the research project into VWMD at IHMRI.
"It's amazing that in just two years the researchers may have found something that can help Chloe and Holly and other children with this devastating disease," Mrs Saxby said.
This year's walk will be held on March 7, with participants walking 40km between Shellharbour and Austinmer.
Walk founder Chris Lovatt thanked the Illawarra community for their ongoing support. "This is the third year the walk has supported the research into VWMD at IHMRI and we're delighted progress is being made," he said.
"Last year we had 800 walkers and raised $150,000 - this year we want to make it the biggest walk yet and get over 1000 walkers and make it to $200,000."
He also urged businesses to put their support - and sponsorship - behind the walk, and the research.
To register or donate to the 2020 event, visit www.greatillawarrawalk.com.
