Photo by Adam McLean

Hope for Illawarra families searching for a cure for rare brain disease.

Associate Professor Lezanne Ooi has been leading the Vanishing White Matter Disease (VWMD) research project at IHMRI for the past two years.

Professor Ooi says they are now at a critical time in the research phase.

“We have some promising leads as we have found some potential drugs that can protect against the VWMD cells in the dish. We have now shared the data with Chloe Saxby’s neurologist who is assessing her medications.”

“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 be used in combination as a treatment,” she added.

The research update is welcome news for Chloe’s mum Nyree.

“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.

“We are so very thankful that IHMRI took an interest in Chloe’s story and wanted to help us in our quest to save Chloe, Holly and all of the other children around the world with VWM disease.”

Eleven-year-old Chloe Saxby was diagnosed with the disease eight years ago and eight-year-old Holly Burns from Mollymook, south of Wollongong, was just 19 months old.

For both families it has been a long and challenging journey.

“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.”

To support the ongoing research into potential drug treatments for VWMD, the organisers of the Great Illawarra Walk have again committed to donating all money raised from the 7 March event to IHMRI.

“Last year we had 800 walkers and raised $150,000 – this year we want to make it the biggest walk yet and make it to $200,000,” said Chris Lovatt.

“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.

Since its inception in 2008, the Great Illawarra Walk has raised more than $830,000 for children in need throughout the Illawarra, including Camp Quality and Wollongong Hospital’s Neonatal Unit.

Professor Ooi says the VWMD project would not be possible without support from events like the Great Illawarra Walk and the generosity of the community.

“I really want to thank the event organisers and the Illawarra community for their ongoing support, otherwise this research would not be possible,” Professor Ooi said.

Registrations are now open for the 2020 Great Illawarra Walk.

Join Team IHMRI on the Great Illawarra Walk

Media contact

Louise Negline, Communications Coordinator

t: 4221 4702

m: 0417 044 867


Top photo: Supplied by Illawarra Mercury

Photo by: Adam McLean

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