Donor rates in New Zealand are so low that children in need of transplants are being forced to head to Australia.
Despite a 30 percent increase overall in the past year, child donor numbers remain crucially low.
Two-year-old Lily was born with hypoplastic left heart syndrome, meaning the left side of her heart was underdeveloped.
She underwent three major heart surgeries at Auckland's Starship Hospital by the time she was one, but what she needs is a new heart.
"Without a heart transplant she won't survive another year," says her mum Veronika Klingler. "Expectations given to us were one to two years but we've been waiting for seven months."
The chance of getting a suitable donor in New Zealand is next to none.
Over the past 20 years there's been on average just one child donor a year, so the family has relocated to Melbourne for a better chance.
In Australia there were 10 child donors under the age of 11 last year.
But the wait, away from family and home, has taken its toll on her parents.
"It's certainly tough on us," says Lily's dad, Adam Leadbetter. "Emotionally it's draining, we didn't think that we'd be waiting this long.
"It's really important to get donor awareness out there. Every family doesn't want to pack up their life and move country because they don't have a chance where they're from."
Starship Hospital heart surgeon Kirsten Finucane says it's tough to send families away.
"We've often bonded a lot to these children and families and we recognise that when we need to send them to Australia it's a very big impact on the family," she says.
Dr Finucane would like to see an 'opt-out' system to raise donor numbers, like many parts of Europe and now Wales. It assumes consent unless families specifically chose not to donate.
But she says raising awareness is the next best thing.
"Really it's the sort of thing families need to have talked about beforehand and decided before these nasty events occur," Dr Finucane says. "Even though it's a very extreme thing, perhaps, to give up the heart of your loved one, as you're making decisions about their death, actually their value is immense."
For Ms Klingler, knowing the chance of life for Lily means the heartbreak of another family is tough, but she says those willing to receive an organ should be willing to donate.
"It's the most precious gift you can give to someone. And it's very horrible to think someone else is going to lose their child in order for Lily to receive the gift of life."
They hope Lily's story will help others get a better chance.
A Givealittle campaign has been set up to help Lily's family.
Newshub.
