Steven Young, one of New Zealand’s first ever liver transplant babies, has died aged 24.
Young, who doctors said wouldn’t live past the age of three, was born with Biliary atresia, a rare disease that affects the bile ducts in the liver.
When he was just four-months-old, specialists told his parents he would need to be flown to Brisbane for a liver transplant and his surgery would cost $250,000.
Young’s plight made headlines at the time, and a nationwide campaign fronted by celebrities including the late Jonah Lomu, Sean Fitzpatrick and photographer Anne Geddes helped to raise the funds needed for the life-saving surgery.
Young eventually underwent three transplant operations. He had his first operation when he was two. This was followed by a second operation when he was 12.
While each operation extended Young’s life by 10 years, his third operation in 2015 was not as successful with specialists informing Young’s family five weeks ago his situation was terminal.
He died on April 15.
All Blacks legend, the late Jonah Lomu. Photo: Getty Images
In an interview with the Herald on Sunday just a few weeks before his death, Young’s mother Zana Collins recalled people’s generosity at the time and touchingly offered her thanks to all those who helped her little boy.
“We want to thank everyone involved back then but also everyone else, from people who gave 20 cents to $20.
“There were people who recognised Stevie in his push-chair and ran over and gave us a few dollars to help,” Collins said.
His sister, Sommer-May Lee, told NZME Young’s greatest wish was to raise awareness of the importance of organ donations.
“Our whole family is really passionate about this,” Lee said, “and we think we should have an “opt out” system for organ donation.”
Before his death, Young had also spoken about the mental health issues he faced, that are common to many transplant recipients.
He discussed struggling with depression and suicidal thoughts in a podcast called Against All Odz.
“I’ve always considered myself a burden to my family,” Young told the podcast’s host.
More information on organ donation in New Zealand can be found here.
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