One of NZ's first liver transplant babies now 24 and terminally ill

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 largest fundraising campaign for an organ transplant 23 years ago has just days to live.

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.

Now 24, and after three life-saving transplants, Stevie is terminally ill and spending his last precious moments surrounded by family and friends.

Sommer-May Lee and her brother Stevie Young who is terminally ill with liver disease. Photo / Supplied

At his Drury home yesterday 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.

Anne Geddes image of Steven.

"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 has 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," she said.

In the past few weeks Stevie has brought people together once again.

Family and friends have come from overseas, there have been harbour cruises, family dinners and an exclusive Star Wars movie night.

Stevie Young's mother Zana Collins and sister Sommer-May Lee have tattoos to raise awareness of the importance of organ donations. Photo / Brett Phibbs

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 yesterday," 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.

Steven Young as a child. Photo / Supplied

"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."