Alice thought her baby had a tummy bug. Six weeks later, she was in the ICU
Alice Kemenyvary thought her six month old daughter Eva had a 'tummy bug'.
A few weeks later, Eva was in the Paediatric Intensive Care Unit (PICU) and Kemenyvary was living in a nightmare.
Eva was born healthy in November 2022 and seemed to be thriving, until a sudden bout of vomiting and diarrhoea struck in early 2023.
Eva was born healthy before suddenly taking a turn at about six months old. Supplied
But doctors' tests couldn't seem to find anything wrong with her.
By the time six weeks had passed, Eva was underweight, refusing milk and failing to thrive – and her parents were terrified.
"It was very traumatic," Kemenyvary told nine.com.au.
Unwilling to see her baby get any sicker, she took Eva to hospital where she went through test after test as doctors tried to get to the root of her mystery illness.
She was moved to the PICU and there were several touch and go moments before Kemenyvary finally got answers.
"They did a lot of genetic testing and we had no expectations that anything would come back," she said.
"But it came back with this very rare diagnosis of LRBA deficiency."
Eva spent weeks in the PICU and there were several touch and go moments. Supplied
A rare genetic disorder, LRBA deficiency impairs the normal regulation of the immune system.
In Eva's case, it made her immune system constantly attack her own body – specifically, her stomach.
Kemenyvary was devastated when she learned about Eva's diagnosis.
Even more so when doctors explained she and her husband were both carriers of the gene that caused it.
It was pure luck that their first child, Eva's brother Teddy, wasn't affected.
"The thing that really floored me was they said, because you're both carriers, your children had a one in four chance of having this," Kemenyvary said.
"The fact that we had a healthy first child was astonishing."
It was pure luck that Eva's older brother Teddy wasn't affected. Supplied
Finally having a diagnosis meant doctors were able to treat Eva with plasma derived products and contain the condition with medication.
But it wouldn't be a long-term fix.
Many Australians with an immune condition acquire other health concerns over time.
To reduce the risk of Eva developing additional illnesses as she grew up, she'd need a bone marrow transplant.
Her parents were understandably nervous.
A bone marrow transplant is no easy undertaking and would require Eva to undergo chemotherapy and endless other tests to prepare her.
Bone marrow can also be hard to come by, as there's a shortage of donors on the stem cell registry in Australia.
But Kemenyvary and her husband knew they had to do it if they wanted to give their daughter the best chance at recovery.
Eva's had to undergo chemotherapy to prepare for the transplant. Supplied
Eva spent weeks in hospital, lost her hair, and had a central line and feeding tube inserted in the leadup to the transplant.
She also needed immunoglobulin infusions, which required donated plasma.
Demand for plasma is reaching record highs in Australia but only one per cent of Aussies are plasma donors, despite an estimated 10 million being eligible.
Currently Aussie donors supply just 38 per cent of the country's plasma needs, forcing the government to spend millions on imported plasma.
Australia spent $600 million on imported plasma products in 2023-24 alone, according to a market study by the NSW Productivity and Equality Commission.
And the demand isn't slowing down.
More than 50 serious medical conditions are reliant on plasma, it's most needed type of blood donation in Australia, and Australia is one of the top users of plasma medications per capita in the world.
During her long health journey, Eva needed plasma products multiple times. Supplied
Like so many Aussies, Kemenyvary was ignorant of the domestic plasma shortage until it had an immediate impact on her daughter's life.
It was "humbling" to think that Eva's health was, in a way, in the hands of total strangers who had donated the plasma that helped her get through her transplant.
Even now, talking about it makes Kemenyvary emotional.
"What would have happened if they hadn't [donated]?" she said.
"It's just unthinkable."
Thankfully, finding a bone marrow donor turned out to be easier than expected; Eva's four-year-old brother Teddy was a match.
With his donated marrow, Eva was able to undergo a transplant in February 2025.
She spent weeks in hospital afterwards, followed by months of check-ups, but almost 12 months on she's thriving.
With her LRBA deficiency no longer attacking her body from within, Eva's a happy little girl looking forward to her third birthday in November.
Eva's bone marrow transplant was successful and she's doing well today. Supplied
Now her family, alongside Australian Red Cross Lifeblood, is calling for thousands of new plasma donors to help meet soaring demand and save lives like Eva's.
"It's so easy to give [plasma], it's 45 minutes in the chair, 45 minutes out of your day, but being on the receiving end, it's just absolutely life changing," Kemenyvary said.
Immune Deficiencies Foundation Australia (IDFA), a national not-for-profit organisation dedicated to improving the lives of those affected by immune deficiencies, is also pushing for greater awareness and advocacy for children like Eva.
Because for every child like Eva who makes an incredible recovery, there are so many still struggling.
Donate blood today - you can book online, on the Lifeblood app or call 13 14 95. You can also join the stem cell registry at Stem Cell Donors Australia.
Have you got a story? Contact reporter Maddison Leach at mleach@nine.com.au
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