Organ donor rates alarmingly low
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 organ donor numbers remain crucially low.
Lily was born with hypoplastic left-heart syndrome, meaning the left side of her heart is underdeveloped.
"Without a heart transplant she won't survive another year," says mother Veronika Klingler. "Expectations given to us were one to two years, but we've been waiting for seven months."
At just two-and-a-half, she'd be the youngest Kiwi to ever have a heart transplant. But the chance of getting one in New Zealand is next to none.
In the past 20 years there's been on average just one child donor a year.
So the family relocated to Melbourne for a better chance.
The bubbly toddler has been taking it in her stride. But the wait, away from family and home, has taken its toll on her parents.
"It's certainly tough on us, emotionally it's draining," says dad Adam Leadbetter. "We didn't think that we'd be waiting this long."
One way to increase donor numbers would be to introduce an opt-out system, like much of Europe and now Wales. It assumes consent unless families specifically request not to donate.
Heart surgeons here say it would make a big difference, but raising awareness is the next best thing.
"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," says Auckland Starship Hospital's Kirsten Finucane.
And knowing the chance of life for Lily means the heartbreak of another family is tough.
"It's the most precious gift you can give to someone," says Ms Klingler. "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."
But they hope Lily's story will help others, like her, get a better chance.
If you'd like to help Lily or find out more about her story, check out her Givealittle page.