DOCTORS told Lleyton Giles's parents four years ago their little boy would die within 18 months.
Today, the determined Bidwill youngster, 9, continues to defy the odds.
The Star first met Lleyton in 2010.
He was born with short gut syndrome and has been in and out of hospital for most of his life.
"We nearly lost him last October when his organs were failing," mum Belinda Hanson said.
"The doctors said he passed away but they brought him back to life. On his good days, I think he's never going to leave us but when he's so sick, I don't see him coming out of it."
She and partner Wes Giles are amazed at Lleyton's fight to live and have since had their sixth child, Summer, now 2.
"I didn't think we'd be here today, not the way he was a few years ago," Mr Giles said.
Ms Hanson added: "Doctors say to us that this kid is unbelievable. He wants to live longer and enjoy more things. His ambition is to do a lot of things."
They are in talks with doctors to decide whether he can go on the waiting list for a liver and bowel transplant.
A double transplant would involve going to Melbourne for a complicated 16- to 18-hour operation.
"We need to know there's nothing more possible to make him better, " she said.
"It's a very risky operation and would add another three to four years to his life. But there will be no happy ending."
Lleyton is a massive Wests Tigers fan, and the team took him under their wing in 2010.
He goes to games when he's well enough and catches up with players in the sheds afterwards.
He delivered the match ball for their recent game against Manly via Careflight helicopter to raise awareness for respite service Bear Cottage, and he also got to meet the prime minister.
Lleyton's bucket list includes a holiday in Darwin and getting his licence.
Ms Hanson knows the inevitable goodbye will happen one day.
"My dream is that he's with us for a long time to come," she said. "All we want for him is to have the best possible life."