A $150,000 donation for research into Vanishing White Matter Disease at the Illawarra Health and Medical Research Institute couldn't have come at a more critical time.
The funds, raised through the Great Illawarra Walk, will boost the research which was started over 12 months ago to help Illawarra girl Chloe Saxby - and others with the rare disease.
"The funding boost for research couldn't come at a more critical time," Chloe's mother Nyree said on Wednesday.
"We've been so blessed that Chloe's health has been relatively stable over the past 24 months, but now we're starting to see some signs of the next stage of this cruel disease.
"Chloe's specialists have confirmed the onset of optic atrophy which is one of the symptoms of the disease and will eventually lead to blindness. The thought of Chloe going blind breaks my heart."
Led by Associate Professor Lezanne Ooi, the IHMRI research involves cutting-edge stem cell technology, generating brain cells to test FDA approved drugs.
"We are testing thousands of drugs in the laboratory to find something that will stabilise and protect Chloe's cells against further deterioration caused by this genetic disease," she said.
"We have started to identify drugs that can protect the cells and need to continue this testing to check whether these drugs could help.
"We just need to slow the progression of this disease in Chloe and buy some more time for her and other children suffering from VWMD."
VWMD is the breakdown of myelin or insulation around the nerves. When this protective cover disappears nerve connections are affected. This insulation breakdown could also affect the nerves that allow Chloe to hear, speak and swallow.
Prof Ooi says the funding will enable her team to ramp up their efforts to try to make a difference to Chloe's quality of life.
"The more time my team can dedicate to this project the greater opportunity we will have to better understand VWMD and work out how we can stop it," she added.
On March 2, more than 800 walkers took part in the Great Illawarra Walk from Shellharbour to Austinmer.
"We had a target of $150,000 and we surpassed that," said event organiser Chris Lovatt.
"The number or walkers and the money raised again just goes to show what Chloe Saxby means to the Illawarra community and how dedicated the region is in rallying to save her life, and also Holly Burns from Mollymook
"We can't thank the walkers, local businesses and Burns and Saxby family enough for their support for this great event."
The 2020 Great Illawarra Walk has been launched and Mr Lovatt has already dedicated those funds to VWMD research at IHMRI.
Registrations for next year's event are now open. You can register as a team or individual at greatillawarrawalk.com