Stevie Young inspired the nation to raise $250,000 for his first transplant when he was just a baby. Photo / supplied
An Auckland man who inspired the nation's biggest fundraising campaign for an organ transplant has died.
Steven "Stevie" Young died peacefully at home on Saturday night, his father Steven confirmed today.
He was being taken back home to Piopio in the King Country where he would be laid to rest in the family urupa on Wednesday.
At just 4 months old Steven "Stevie" Young united sports stars, celebrities and ordinary New Zealanders to raise $250,000 for a liver transplant in Australia.
At 24, and after three life-saving transplants, Stevie was terminally ill and spending his last precious moments surrounded by family and friends.
At his Drury home two weeks ago, Stevie's family, including parents Zana Collins and Steven Young and his brothers and sisters wanted to thank everyone who contributed to their boy's first life saving surgery 22 years ago.
Stevie, one of New Zealand biggest Star Wars fans, was born with Biliary atresia, a rare disease that affects the bile ducts in the liver.
At 4 months old specialists told his parents he needed a transplant only available in Brisbane, and at the cost of $250,000.
Sports stars including the late Jonah Lomu and Sean Fitzpatrick, photographer Anne Geddes and singers such as Annie Crummer were all involved a nationwide campaign to raise the funds.
"We want to thank everyone involved back then but also everyone else, from people who gave 20 cents to $20," Stevie's mother, Zana Collins, said.
"There were people who recognised Stevie in his push-chair and ran over and gave us a few dollars to help."
"That was a lot of money all those years ago."
Zana said Stevie had lived a life brimming with happiness, travels, overseas study and many friends.
The first two transplants, at 2 years and 12 years, extended Stevie's life by 10 years each.
"We don't call them organ transplants, we call them gifts, they gave us Stevie for more than 20 years," sister Sommer-May said.
Stevie's third transplant, on Christmas Day 2015, was not as successful and five weeks ago specialists delivered the heartbreaking news that nothing else could be done.
"It was a complete shock to us, we thought we had at the very least five years," Sommer-May said.
In the past few weeks Stevie brought people together once again.
Family and friends came from overseas, there have been harbour cruises, family dinners and an exclusive Star Wars movie night.
One of Stevie's dying wishes was to see the upcoming Star Wars movie, due for release in December.
Friends contacted Disney International to make it happen but, despite the company's best efforts, there were no scenes ready for Stevie to view.
Instead Disney arranged a viewing of Stevie's favourite Star Wars movie, The Empire Strikes Back.
"It was amazing, they worked with Hoyts at Botany and 28 of us saw it," Sommer-May said.
"There was food set up, there were Storm Troopers and they gave Stevie merchandise. It was so special."
But Sommer-May said Stevie's biggest wish was to raise awareness for organ donation.
"Our whole family is really passionate about this and think we should have an "opt out" system for organ donation."
Many of Stevie's family have tattoos of the green ribbon associated with organ donations.
"It's one way we can raise awareness," Sommer-May said.
"The organs, blood and plasma Stevie received saved his life and gave us so much more time with him."
The 19-year-old disappeared without her wallet or mobile phone.