Watching her friend battle a rare gene mutation that leads to leukemia has inspired Camperdown Mercy Regional College student Brodie Humphrey to lose her locks for charity.
When Stacey Riches was first diagnosed with GATA2 deficiency last year and was told her hair would fall out, Brodie at first joked she would shave her head too.
But it was while Stacey was in quarantine at the Royal Children's Hospital for two months undergoing chemotherapy and a bone marrow transplant, that Brodie decided she would go ahead with it.
"Seeing what she's been through and had to overcome, I can sacrifice my hair. It means it can help her and other families like her," Brodie said.
On March 13, Brodie will lose her 20cm-long ponytail and have her head shaved at school, while some of the boys and teachers have volunteered to be waxed to help with the fundraising effort.
In April last year, Stacey was told she had the gene mutation GATA2 deficiency, a condition which was only discovered eight years ago.
Doctors have told her that, as far as they are aware, she is the only known pediatric GATA2 case in Australia.
"It was making my bone marrow and blood defective towards leukemia," Stacey said.
She had developed myelodysplastic syndrome - which was previously known as pre-leukemia - and it had already started to change her blood and enlarge her cells.
While she didn't technically have leukemia, tests showed she would develop it within years without immediate treatment.
And without a bone marrow transplant, Stacey was told her life would be cut short and towards the end there would be no quality of life. "That's why they had to get in quick," she said.
It took three months for tests to be carried out, and a bone marrow donor to be found because her parents and sister were not a match.
While privacy laws mean they don't know exactly where the donor came from, they believe it was somewhere in Europe.
Since the age of eight, Stacey has battled an incurable lung condition called bronchiectasis - something they now suspect may be linked to the underlying gene mutation.
During one of her regular check-ups at the Royal Children's Hospital for her lung condition, she ended up seeing a different specialist who ordered a range of blood tests which came back abnormal.
Stacey was then selected for one of four government scholarships for genetic testing which eventually uncovered the gene mutation.
After donating her hair in July, Stacey was admitted to an isolation pod in the Royal Children's Hospital to undergo seven days of intensive chemotherapy. It was administered two to three times a day to eliminate her bone marrow so it could be replaced with someone else's.
Stacey said she began treatment knowing that the mortality rate for the transplant was 10 per cent. "When that's you, 10 per cent is a big amount, one in 10," she said.
The treatment made Stacey so sick she was unable to do many every day tasks herself. "I kind of vague out from the second day chemo to probably day 10 post-transplant," she said.
"The chemo completely scrapped my immune system and the transplant has given me a new one."
Only Stacey's family, and one other person, were allowed to visit her during the eight weeks she spent in the isolation pod.
"I was well and truly the granny on the ward. I think the next oldest patient was an eight year old," she said.
Once she was released from isolation, Stacey had to stay in Melbourne for another two months before she was able to come home to Camperdown in November.
After having to drop out of year 11 half way through last year to undergo treatment, Stacey has now returned to school this year part-time. "What should have been my final year, I've still got three years to go," she said.
While treatment is similar to other leukemia patients, the recovery time is a lot longer, Stacey said.
That means the talented bagpiper has been unable to pick up her instrument for more than six months, although she has just been given the all clear to swim again.
As a precaution, she still has to limit the foods she can eat such as deli meats because of the higher risk of contamination.
Tests have shown that 99.87 per cent of her bone marrow comes from the donor - doctors are happy if that number is above 95 per cent - and it can never be 100 per cent.
With medical data on the condition only spanning eight years, she said doctors assume she should be able to live normally. "It will still be in my genes but it shouldn't affect me," she said.
But Stacey still faces a life time of doctors check-ups.
Fundraising tins have been placed in various spots around Mortlake, where Brodie lives, and Camperdown. Donations can be made online at the Leukemia Foundation's website and at the college.
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