Bendigo raised Olivia Slattery says her bone marrow disease and blood cancer diagnosis left doctors "gobsmacked".
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It was a few days before Christmas 2023 when Ms Slattery was told something she'd never even heard of, Myelodysplastic Syndrome (MDS), was skulking around her body tearing up blood cells.
"It really, really rocks you," she said.
"I felt very rattled for weeks after I was told ... it is a really scary disease to Google."
Given two years to live without treatment
The diagnosis came at the end of three years worth of hospitals stays for a rare hip dysplasia, a connective tissue disease and other autoimmune issues, all as her blood count spiralled.
Next steps involved a transfer to the Peter MacCallum Cancer Centre where she would receive extensive treatment. Without it, doctors gave Ms Slattery around two years to live.
"It is a rare disease and there isn't a lot of research around it," Ms Slattery said.
"Everything I was reading was skewed to older people. Which at the time doesn't really make you feel any better."
'My brother literally saved my life'.
Research did point to the success of intensive stem cell transplants following the "highest dose of chemotherapy possible", but Ms Slattery would need to find a donor first.
She looked to her siblings, but said she was "convinced the odds were against" them.
"I was told there was only a 25 per cent chance that we would get a sibling," she said.
Her sister's results came back as expected, she was only a half match. But then, luck struck.
Ms Slattery's brother, James, was an 100 per cent match. He would be able to donate.
"The day that my brother does his donation and the day I have my transplant will forever be extremely special for me," she said.
"My brother literally saved my life."
James said he was in awe of his sister's "positive mindset".
"Her story has been a very tough one, but she is so inspiring," he said.
'He is going to be my twin': donation re-writes DNA
Ms Slattery said that the transplant of a cluster of stem cells would re-write her DNA to match James' and give her a "day zero" immune system.
"So if James is a different blood type, I will also take on his blood type ... that's pretty special to think about," she said.
"It is almost like he is going to be my twin."
Ms Slattery wants the next generation of people diagnosed with MDS to not face the same task of googling a disease they have never heard of.
"I suppose it is like everything, unless you know someone going through something you're just not aware of it," she said.
Donation no longer invasive
A GoFundMe fundraiser had been set up to help Ms Slattery in her journey, but she said there were other ways people could help.
"I had the understanding that to be a donor was going to be quite an invasive procedure ... it is not," Ms Slattery saidsaid.
A surgery where cells were taken from the hip had been replaced with a much simpler process, she said.
Registering involved sending away a mouth swab to a laboratory, while the actual donation donation process resembled something similar to a plasma donation.
And that donation could lead to someone, like Ms Slattery, being "reborn".
"When you have your transplant they classify you as being rebirthed ... they say that if you're well enough you should even throw a first birthday party," she said.
"So it is really, really incredible."
You can register to become a stem cell donor here.
