Evie Durston is a fighter, whether she knows it or not

But most four-year-olds don’t have a belly scar from an open biopsy. Or a port-a-cath. Or a ‘favourite’ hospital.

Yet Evie’s cheeky smile still beams bright as she lives her young life with neuroblastoma amplified sequence, a gene mutation that causes her to go into liver failure if she falls into a fever.

It’s a reality that tugs ruthlessly on the heartstrings of those who know her, and it began as the unwanted first birthday present that neither of her parents, Aimee and Hayden, expected.

“Leading up to her first birthday, she got sick and we took her the hospital,” Mr Durston said.

“She was beyond Shepp’s abilities to heal — things weren’t making sense to them.

“We drove to Royal Children’s Hospital and spent her first birthday in ICU there.

“Her blood went really thin, she was at risk of bleeding out internally and she’d gone into liver failure.”

Mrs Durston said her daughter had a “miraculous” turnaround, leading doctors to think Evie had been hit with a nasty concoction of superbugs — a perfect storm of sorts — and was now in the clear.

But six months later, Evie got sick again. Really sick.

While away in Bright, the Durstons rushed her to the local hospital where she was transferred to a Wangaratta facility.

With time of the essence, Evie was put on a specialist PIPER (Paediatric Infant Perinatal Emergency Retrieval) aircraft and flown to Royal Children’s Hospital, her body limp and languid.

In that moment, her parents were told with room scarce they would not be able to accompany her.

“She’s 18 months old and basically on the bed lifeless, she couldn’t really respond. She was awake but not alert,” Mr Durston said.

“That was the longest car drive of our lives going down to Melbourne.

“(The doctors) promised they wouldn’t let us leave without figuring out what is going on.”

Though answers were promised, that second visit was just as, if not more, horrifying than the first.

With Evie’s liver shutting down, her spiking ammonia levels brought a grave threat of brain damage, while her international normalised ratio (blood clotting tendency) sat astronomically higher than the standard amount.

Mr and Mrs Durston were directed by a team of gastroenterologists to perform eligibility tests for a liver transplant, not long after Evie had gone under the knife to obtain a sample of her liver.

The medical experts were able to fast-track a blood test, which whittled down the suspected three extremely rare genetic conditions to one, and it was later confirmed as NBAS.

The gene mutation was only properly recognised as a condition in 2015 from a study of about 50 people worldwide, and possible accompanying symptoms include blindness, short structure and weak spine.

There is no cure, only preventative maintenance.

For most parents, the news would shock them to the core — and it was no different for the Durstons.

“It was a lot to take in, but what do you do? You’ve got to roll with the punches, and it has sort of been the theme since,” Mr Durston said.

“One of the first things we talked about was, to what extent do we let her live her life?

“There was always the question, do we send her to day care, do we send her to kinder, because those are the breeding ground for germs.

“It’s like a catch-22 — you keep her out, but it’s not much of a life stuck at home, is it?

“She doesn’t get sick a lot, but then but she doesn’t build her immune system, so when she is older and out living her life and catches something for the first time, it will hit her really hard.

“We decided to let her live her life, take the risk, roll with the punches and do our best to keep her safe.

“She’s too much of a personality to hide, she’s so strong-willed and -minded — she’s beautiful.”

Through her parents’ strong will, Evie has grown into the brave, bold and brilliant young girl she was destined to be.

Even as Mrs Durston rightly acclaims, “she’s definitely grown up a lot more than what she should have to for her age”.

Evie excels in her chosen hobbies, whether as a bubbly ballerina, a fierce swimmer or a maestro in the making on piano. Next year she’ll start Auskick.

She’s also a loving sister to two-year-old Matilda, whose conception came with a degree of anxiety as to whether she’d be born with the same genetic mutation as Evie.

But while those fears were waved away at birth, it wouldn’t have mattered if the news revealed they’d be forced to relive Evie’s struggle.

Because the Durstons are unwavering in strength, ironclad by the love that binds them.

“We’ve got an album of all the pictures of every time she’s gone to hospital, and as a parent it hurts to look at,” Mr Durston said.

“They were some of the darker times, but I think the strength and growth of seeing her look at it, it’s her story, she needs to know it, she needs to own it.

“I guess the dark times make the lighter ones so much more bright.

“Once you come home from the hospital just to get the four of us back together, it doesn’t matter what you’re doing.

“It just reminds you how special and sacred it is having family.”

While the Durstons are a tight-knit clan of four, an extended ‘relative’ has served as a beacon of hope during Evie’s battle with NBAS: the staff at Royal Children’s Hospital.

In each of her 14 hospital visits, there has been a hand to hold, an ear to lend and a bed ready to lie in after a night that seemed like it may never end.

The Durstons have organised a Good Friday fundraising appeal to say thanks for the support they’ve received, urging anyone who has been aided by the Royal Children’s Hospital to also show their gratitude.

“We’re showing our support because they’re there for us, they’ve been there for us, they will be there for us,” Mr Durston said.

“I don’t know if Evie would be here without them.

“The more I talk about it, the more I realise how many people I know have been there growing up, or their kids are going there for various different reasons.

“It almost seems rare to find someone who hasn’t had an experience there. Whether you needed them or not, they’re there for you.”

To donate to the Durstons’ appeal, visit https://fundraise.goodfridayappeal.com.au/fundraisers/aimeedurston/gfa.

An Instagram page has also been set up by Mr and Mrs Durston to track Evie’s progress and can be found at @genevieve_takes_on_the_world.