A Mollymook family continues to raise funds to support research of a rare condition their daughter lives with.
Amanda Burns is set to shave her 85-plus centimetre hair as she looks to raise funds to help find a cure for Vanishing White Matter Leukodystrophy, a terminal condition her daughter Holly has.
The brave shave is set to take place at Mollymook Golf Club on Saturday, May 5. The shave is set to start 1pm and all are welcome, Mrs Burns said.
Mrs Burns previously told the Times that Holly was a driving behind the decision. In August 2017, Holly’s older sister, and Mrs Burns other daughter, April cut her long locks short for the same cause.
“With all Holly endures each and every day she still gives us that divine smile of hers,” she said.
“We love this girl to bits and I would do anything for my baby girl.”
On April 5, Daniel, Amanda and Holly participated in the Illawarra Health and Medical Research Institute’s testing on skin biopsies.
The family donated biopsies of their skin that will be grown into stem cells and then brain cells, Mrs Burns said.
“From there they will then be used to trial various medicines to try to halt and reverse the effects of vanishing white matter,” she said.
“This all costs money which is why I am doing the shave.
“Currently, there is no government funding for research into Holly’s rare condition.
“Raising awareness is half the battle in raising funds as the condition is so rare not many people know about it.”