Sweet 16 and a whole new life begins, thanks to organ donor, for Corowa's Zoe Smith

But her parents didn’t quite get the message, so she attempted to write instead.

‘Are my eyes white?’ was the question Neil Smith deciphered from the scribble.

And he was pleased to tell his teenage daughter – who now had a functioning liver and a whole new life ahead of her – that they were.

“I got really self-conscious by the end of it because my eyes were really yellow, almost green,” Zoe says, back in her Corowa home.

Diagnosed with biliary atresia, a rare disease causing bile to be trapped inside the liver and eventually organ failure, Zoe’s eyes and skin have always been discoloured.

But things got worse last year, after a family trip to Bali.

“We noticed Zoe was getting really yellow, so we took her to the doctor when we got back,” Neil says.

“At Albury they did an MRI and said there were extra bits on her liver, and that we’d better get to Melbourne.”

Tests were inconclusive at first, but with the worst possibility on the doctors’ minds, they put Zoe on the active waiting list for a transplant anyway.

Back to Corowa the Smiths went, and things continued as normal for a while.

That was until Zoe went into atrial fibrillation – her heart was jack-hammering – and she was flown back to Melbourne.

“They ended up doing a biopsy at the Austin Hospital and confirmed it wasn’t an aggressive cancer, but it was definitely cancer, and they had to get the liver out,” Neil says.

From then on, the phone in his pocket weighed a tonne and it was the elephant in the room as they went to bed.

But one night, its piercing ring woke Neil and partner Jodie.

It was an out-of-body experience as they gathered their things, along with their courage, flying out the door and into the car.

“We asked Zoe how she felt, and she said ‘I’m excited, I’m a bit emotional, I’m everything’,” Jodie says.

“She was so brave through the whole lot.

“She knew it was going to be a chance for her life to change forever.”

Things didn’t really sink in for Zoe until doctors showed her a picture of the new organ that would soon be her own.

“I wasn’t really scared – I didn’t really think it was real,” she said.

“Then they showed me the liver and it was like OK, here we go.”

Zoe has known her entire life she would one day need a new liver.

As a baby, she underwent a Kasai procedure, where a segment of her intestine was sewn directly to her liver so she had some form of biliary system.

Nearly half of all infants who have had this procedure require liver transplantation before the age of five.

But Zoe kept on going for 16 years.

“Zoe has been waiting for this since she was born and if there were more available, they would give them to everybody when they were diagnosed – usually within the first 10 weeks of their life,” Neil says.

“They’re just not available, so they keep them going as long as they can.

“People in the hospital just could not believe Zoe was 16 and had a Kasai operation and had not been living in the hospital for long periods of her life.”

Zoe has spent her entire life battling fatigue, unable to play sport and do many of the things her peers can.

Above all, the uncertainty of the future has been a weight no young person should have to bear.

But thanks to the ineffable generosity of her donor’s family, who despite the grief of their loss were able to consider the pain of another, Zoe has the whole world at her feet.

“It would have been so hard for the family and we could never thank them enough for what they’ve given to Zoe,” Jodie says.

Zoe says she finds it hard to adequately express her gratitude.

“There’s no words; nothing is strong enough to say thank you,” she says.

“I don’t know if normal feels like this, but it’s so different to what I felt like before.”

Neil wants Zoe’s story to be a source of motivation for others.

“It’s changed our lives, it’s changed our daughter’s life – she now has a life,” he says.

“Only one in five people in Victoria are registered to be organ donors and that’s the worst rate in Australia.

“So many people say, ‘I put it on my licence’ – that doesn’t mean anything.

“If you sign up, and people don’t know, then you haven’t expressed it.”

Even if a person is listed on the organ donor registry, when the time comes a decision ultimately comes down to the family, making it so important they know of their loved ones’ wishes.

“The conversation is the most important thing – signing up to be an organ donor is the second most important thing,” Neil says.

Jodie reckons there isn’t one young person in Corowa who hasn’t already had the conversation – Zoe has long been on a mission to spread the word and last year appeared in The Border Mail.

“It’s amazing how many kids are saying, ‘I’m going to donate now’ and talking to their parents,” she says.

Corowa and the wider community have followed Zoe’s journey every step of the way, through a Facebook page Jodie set up.

They have rallied to help the Smiths in any way they can.

“We couldn’t go into Ronald McDonald House because Zoe had to be in isolation, so we had to rent an apartment,” Neil says.

“The Wahgunyah Football Club are paying for that accommodation, which is unbelievable, and Guy Street Cafe put on a raffle. 

“We want to thank the community, Royal Children’s, but most importantly we want to thank the donor family.”

With her future stretching out in front of her, Zoe has decided on a career.

“I always kind of wanted to be a nurse – every time I have spent time at the hospital it has really interested me,” she says. “I want to help people and I want to hopefully become a liver transplant co-ordinator, because I could tell them what it’s like.”

But not even Zoe can describe what it’s like to receive an organ.

The donated liver breathed new life into her immediately – she had just opened her eyes post-transplant and her family could already see the change in her complexion.

And as she recovered over the following few weeks, a Zoe no one had met before introduced herself to the world.

“We celebrated her 16th birthday with all the nurses and they put up balloons,” Jodie says.

“We gave her a locket for her birthday and on it has the date of her transplant.

“It’s also for her to take her anti-rejection drugs; she’s little miss socialite, so if she goes out at night, she’ll always have them on her.”

For any other family, celebrating a birthday in a hospital ward would be a sad occasion.

But for Zoe Smith and her loved ones, it brought joy. It meant she had been given the greatest present of all – the gift of life.

The Smith family share their story as DonateLife Week approaches on Sunday.

Last year in NSW, there were 133 deceased donors and 412 organs transplanted – the highest numbers yet.

The record was reflected in Victoria, with 140 deceased organ donors. 

While these are promising statistics, DonateLife Victoria state medical director Rohit D’Costa said just one in five Victorians were on the Australian Organ Donor Register.

“We’re urging everyone to make their decision count by signing up and talking to their loved ones,” she said.

“Zoe is proof of the life-transforming benefits of donation.”