Meet Allie, Isabelle, Miriam and Esther: They are living proof of how well organ donation works
Isabelle, Allie, Miriam and Esther have one thing in common: they live – and thrive – with a liver they were not born with. These are their stories.
Conditions
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Allie, Isabelle, Miriam and Esther aren’t friends from school, nor do they meet at weekend sport. The one thing all four have in common is they live – and thrive – with a liver they were not born with.
Esther was six months old when she was diagnosed with biliary atresia, a rare condition in newborns that blocks bile ducts and prevents bile from draining from the liver. The bile backs up, ultimately causing fibrosis, cirrhosis, liver failure and death if left untreated.
Surgery, known as a Kasai procedure, was unsuccessful in Esther’s case and meant she would wait another eight months on the liver transplant waitlist for an organ match.
Her mother, Jenny, said organ donation had never crossed her or husband Andy’s mind until they were faced with the reality of their only child, needing a transplant.
“It’s not something I had been aware of until I was in it, to give someone else a second chance at life,” she said.
“It’s been a bumpy journey, but the clinic has been great and obviously without the liver she’s got from a donor, she wouldn’t be where she is today – thriving.”
She has grown into a “very strong-minded, funny and caring” kindergarten student.
“She’s a very resilient child,” Jenny said. “What got us through (the transplant) was seeing her happy throughout the whole process. She was never frightened, or beaten by what was needed of her.”
Biliary atresia is the most common reason for liver transplants in children.
Allie was also diagnosed with the condition, just three days after she was born to mum Claire in a Canberra hospital with liver levels “all over the show”.
It was six months before she was “worked up” for a transplant and a further six before a match became available, with Allie eventually undergoing surgery two days before her first birthday.
“It brings about a lot of anxiety – you have a baby who’s getting sicker and sicker, and the clinicians are doing everything they can to sort of extend her health as well and as long as they can,” Claire said.
Allie has been the very definition of a poster child for organ donation ever since, fronting multiple campaigns and joining her mum in urging all Australians to join the donation register.
In 2017, then five-year-old Allie dressed as a superhero for DonateLife. Now, as a budding comic illustrator in high school, Allie has picked up her digital pen to reimagine herself as a teenage organ transplant hero.
Giggly seven-year-old Isabelle was diagnosed four years ago with Wilson’s disease, a genetic condition that prevents the body from getting rid of copper and affects around one in 40,000 Australians.
Her symptoms, including constant nosebleeds, were initially dismissed as being “common in kids her age” by her GP, her mother Brittany said, kicking off a months-long cycle of appointments with pediatricians before the family landed up in The Children’s Hospital at Westmead.
So severe was Isabelle’s condition that, just 18 days after being admitted to hospital, she would undergo transplant surgery. It was two weeks later before Brittany would learn her daughter’s diagnosis.
No-one watching the energetic girl jump around, roaring like a lion, would guess at the ordeal she and her family have been through.
At 15 Miriam is the oldest of the four but has one of the youngest livers.
“Miriam has a metabolic condition called methalonic academia, and that meant that progressively she got more and more unstable,” mum Catherine said. “It got to the point where we were just bouncing in and out of hospital every three weeks … before the transplant, she was vomiting several times a day.
“I remember saying to the metabolic doctor ‘this is not liveable, we need something else’. She said: ‘The next thing’s liver transplant’. And I’m like, wait, what? No, something other than that!”
Flash forward and Miriam, a creative spirit with a caring nature, is counting down the days until her sweet 16th and has already picked her HSC subjects for the next year.
“I’m gonna do CAFS – which is community and family studies – because I want to be a nurse,” she said proudly.
“I just love the hospital, concerningly. Mum doesn’t understand how I love it.”
Beyond the regular blood tests, daily anti-rejection medication and Miriam physically tiring quicker than her peers, life continues as it would for any other teen.
All four girls are leading happy lives, celebrating birthdays they would likely never have reached were it not for the four people who chose to have their organs donated when they passed away, or the families who made that decision for them.
Allie’s mother Claire described organ donation as “the opportunity to make the worst moment of your life, the best moment of someone else’s”.
“When someone passes away suddenly and you are asked if you want to donate their organs – or if they’ve signed up and you’re asked to consent – it’s really difficult to process what that means,” she said.
“But what it means is that there’s people like our family and other families that are also having a really bad time … and you can turn their whole experience around.”
Originally published as Meet Allie, Isabelle, Miriam and Esther: They are living proof of how well organ donation works
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