A Mollymook mum lost 85 centimetres of hair on Saturday, May 5 in an effort to raise funds for research to finding a cure for a terminal genetic disease her daughter has.
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Amanda Burns hopes to raise $10,000 for research to better understand and treat Vanishing White Matter Leukodystrophy, an illness her six-year-old daughter Holly has.
The mum of five shaved her head at Mollymook Golf Club on Saturday, holding a raffle and guessing competition, raising more than $1100 for the cause. Collection tins placed throughout the region are yet to be collected and counted.
“Holly is pretty special and I would do anything for her,” Mrs Burns said.
“Totally stoked, raising that much in one day is fantastic. It is pretty awesome.”
All money raised will go towards Australian-first research into the disease at the Illawarra Health and Medical Research Institute.
Holly is one of only seven Australian children – and 170 worldwide – battling the disease. She, along with Amanda and dad Daniel, have donated skin biopsies for the research.
“No research has been done in Australia before this,” Mrs Burns said.
“The research they are doing there is using Holly’s genes.”
Illawarra girl Chloe Saxby, who has the same rare illness, is also taking part in the research.
The Saving Chloe Saxby campaign was launched in 2016 and has raised hundreds of thousands of dollars for research into the disease.
“It is pretty exciting because if they find something that works in the research, it will work for our girls. Each child with the condition has a different variant of the gene,” Mrs Burns said.
“It something works for Chloe, it might not work for Holly because of the different genes, so it is pretty exciting knowing they are using both of their genes to see if something works.”
It takes up to six months for the skin cells the Burns’ donated to grow into stem cells, and then brain cells.
“Once they get them to the brain cell stage, that’s when they try different medicines to try and holt the condition, and then hopefully reverse it,” Mrs Burns said.
“Because condition is so rare, people don’t know about it to do research. That is why getting the word out there about the condition and getting it known about is half the battle.
“Once people know about it, they release, ‘Hey, we need to do something about this’. It is up to parents to raise the money because there is no government funding.”
To donate, visit http://hollyburnsfoundation.webs.com/.