1492464335809 - Three-time liver transplant recipient’s battle with rare disease and demons

Three-time liver transplant recipient’s battle with rare disease and demons

Even as he lay in a coma, it was natural for Stevie Young to fight to the end.

The 24-year-old wasn’t supposed to live past the age of 3.

But the three-time liver transplant recipient made a promise to his family that he would see his life through as far as he could.

Young, who died on Saturday night, “always danced to the beat of his own drum”, sister Sommer May said.

He was diagnosed with the rare disease biliary atresia at 4 months old.

The disease affected the bile ducts in his liver, meaning bile built up inside the organ, causing scarring and damage.

Three liver transplants over the course of his life meant Young could continue his fight, but he was also battling demons that lurked in his mind.

In a podcast called ‘Against All Odz’, the usually quirky and loving young man opened up about his struggle with a deep depression and how he wrestled with suicidal thoughts.

He admitted to trying to end his life twice. 

“Depression is a really big thing for me . . . I’ve always considered myself a burden to my family,” Young confessed.

“At 16 . . . I really got revelations of being a burden and maybe it’d be better if I wasn’t here.

“Everybody’s reassured me that that’s not the case . . . I felt like everything that had happened to me tore my mum and dad apart, tore my family apart.

“You can’t help these feelings.”

The podcast received more than 2000 hits in its first couple of days.

Young’s father Steve said the family was warned the darkness of depression could creep up on their son.

They were told a combination of post-traumatic stress disorder from his illness and surgeries and a chemical imbalance could batter Young’s emotions.

A diagnosis confirmed he was in the early stages of psychosis.

“We were told by the hospital [depression] was something that could happen with transplant kids,” Steve said.

“It’s the drugs he’s on, it’s the life that they could have, it’s the pain that they feel and we were told this when he was 5.

“So when he told me, ‘Dad, honestly, I wanted to commit suicide,’ it was just a mirror of what we were told 15 years earlier.”

Young’s first crack at life came as the result of a huge fundraising campaign in the 1990s. It brought together sports stars, celebrities and Kiwis across the country.

More than $250,000 was raised and Young, originally from Botany in east Auckland, travelled to Brisbane to receive what would be his first liver transplant, at 2 years old.

When he was 12 he received another liver that took him through to his 21st birthday.

Young’s was literally a “gifted” life, May said.

He remained in Australia to be close to his doctors following the first surgery, before making a move to California with his mum.

He grew into a caring, loving and funny young man, his family said.

“He’s the funniest person but can be the most humble . . . he’ll also tell you what he thinks of you even if he hasn’t seen you in ages,” younger brother Elijah said.

“He’s also really good at keeping secrets,” youngest sister Nazareth said.

“Nothing surprised him. You can tell him anything and he can give the best advice and no one had to know.”

Young loved cats and Star Wars. He played a lot of PlayStation, worked at EB Games and knew movie quotes off by heart.

He listened to Marilyn Manson and rocked a purple mohawk at one stage, but also enjoyed the arts and wanted to be a history professor.

But Young’s third transplant, which he received on Christmas Day 2015, would not see him through.

In March this year doctors gave the heartbreaking news his liver was failing and there was nothing more they could do.

Young was told he had weeks left.

Last Tuesday he lay unresponsive, surrounded by family and friends, at Totara Hospice in Manurewa, south Auckland.

Doors down from him, his dad and siblings sat together and talked of Young as if he were in the room.

“I’m sure what he’d like to do now is play his games,” Elijah said.

Faced with the reality of time running out, Young decided to go public in the podcast with the life he lived.

“I’m OK with the fact that I’ve got weeks to months to live,” he said.

“The doctors have said to me prior that I wasn’t supposed to live until 3, and now I’m close to 25, so miracles do happen.

“If I go, I’m not afraid to go, but I won’t go without a fight.”​

Young said he wanted to put mental health issues, especially for transplant recipients, in the spotlight.

He also wanted people to know the importance of organ donations.

Ultimately, he said, he wanted his passing to “teach” for the future.

“I believe personally that we don’t live on . . . rather, what we know and what we have done through this world turns into knowledge and it’s our job when we die to pass on knowledge.

“You don’t need to turn into a spirit or an angel, you just need to teach.”

WHERE TO GET HELP: Lifeline: 0800 543 354  Suicide Crisis Helpline: 0508 828 865 / 0508 TAUTOKO (24/7). This is a service for people who may be thinking about suicide, or those who are concerned about family or friends.  Depression Helpline: 0800 111 757 (24/7)  Samaritans: 0800 726 666 (24/7)  Youthline: 0800 376 633 (24/7) or free text 234 (8am-12am), or email talk@youthline.co.nz  What’s Up: online chat (7pm-10pm) or 0800 WHATSUP / 0800 9428 787 children’s helpline (1pm-10pm weekdays, 3pm-10pm weekends)  Kidsline (ages 5-18): 0800 543 754 (24/7)  Rural Support Trust Helpline: 0800 787 254  Healthline: 0800 611 116  If it is an emergency and you feel like you or someone else is at risk, call 111.

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