Terminally-ill teen Lleyton Giles, (pictured) still continues to defy the odds
A terminally-ill child who was told he had months to live has defied the odds and survived for nine years.
Leyton Giles, from western Sydney, has spent his life battling short-gut syndrome, an incurable disease which means he cannot absorb food properly due to small intestine problems.
Despite a lifetime of hospital admissions, surgeries, sepsis and illness, the 14-year-old, named after Australian tennis great Lleyton Hewitt, has found the strength to bounce back every time.
‘It’s hard to believe – the doctors are as stunned as we are that Lleyton is still here with us,’ his sister Shania Giles, 22, told Daily Mail Australia.
‘If you saw him walking down the street, you wouldn’t even think he was terminally ill.’
His father Wes Giles added: ‘Looking back, we didn’t expect he’d be still here. But now knowing the resilience and courage this boy of mine has shown over the years, nothing is impossible.
‘I’ve never met anyone as determined as him and I don’t think I ever will.
‘He just rolls with the punches and gets on with it.’
Little Lleyton (pictured with Benji Marshall in 2010) became the Wests Tigers unofficial mascot. The photo now stands now as a moment that sticks out for Marshall during his career
Hospital has been Lleyton’s second home his entire life.
He weighed just 500 grams when he and his twin brother Connor were born premature at 28 weeks in 2005.
Lleyton was just 18 days old when he underwent open heart surgery, followed by laser eye surgery but the worst was yet to come.
A week later, Lleyton contracted an infection which killed most of his bowel.
Lleyton’s parents and siblings had a massive party for the youngster (left) following the news
Nine years on after being told he had months to live, Lleyton is living his healthiest year yet
Lleyton has always been fed via a central line connected to a main artery in his neck and straight to his heart.
His 22nd central line was inserted earlier this year.
‘He’s always had this strong determination and has never been one to complain,’ Shania said.
‘Even when he’s been sick, he’s never been sooky.’
In 2010, Mr Giles and Lleyton’s mum Belinda Hanson and his four siblings were given the harrowing news the five-year-old was living on borrowed time.
Lleyton (pictured right with twin Connor and Tigers player Esan Marsters) is still a Tigers fan
Born premature at 28 weeks, Lleyton has always had the odds stacked against him
The family threw Lleyton the biggest party possible as they began to prepare for the worst.
‘I was in high school at the time when our whole lives were uprooted and were spent at the hospital,’ Shania recalled.
‘It took a great toll on my parents, who eventually split up due to the stress. We’ve rushed to the hospital to say our goodbyes to him at least 10 times.’
It was around this time little Lleyton’s heartbreaking story made headlines as he became an inspiration to his beloved NRL team the Wests Tigers.
Now 14, the western Sydney teen competed in a fun run earlier this year
‘Even when he’s been sick, he’s never been sooky,’ Lleyton’s sister Shania Giles said
He was a regular presence in the Tigers dressing room after matches and struck up a close friendship with his hero, Tigers star Benji Marshall.
Despite a brief switch to rugby union and stints with other NRL clubs before returning to the Tigers in 2018, Marshall has remained in regular contact with the family over the years.
Marshall visits whenever Lleyton is in hospital and publicly paid tribute to the teen in lead up to his recent 300th NRL game.
Lleyton, celebrating a Wests Tigers win in 2010, became an unofficial mascot for his club
When asked about a photo from his career that stood out, Marshall referred to one of him carrying young Lleyton on his shoulders after a Tigers win in 2010.
‘He helped put perspective into my life,’ Marshall told Fox Sports program The Fan in July.
‘Lleyton Giles was this young kid who was given six months to live and he came down to training one time and he didn’t long to live so after one game, I put him on my shoulders. And believe it or not, the kid is still alive today.’
‘He actually gave a framed photo of him on my shoulders, saying ‘Thank you Benji for helping me stay alive.’ I have it at home.’
Benji Marshall, pictured with Lleyton and his two brothers has remained in touch
Lleyton Giles and Benji Marshall (pictured together) still keep in touch and remain great mates
Mr Giles is extremely grateful for the strong support network behind the family which has been vital in Lleyton’s survival.
‘There’s no doubt the Wests Tigers helped Lleyton get through the early stages where he was treated like a rock star,’ he told Daily Mail Australia.
‘We’ve been lucky to have so much support. We’re just one of thousands of parents in NSW with a sick child. Many others haven’t had the incredible luck we’ve had.’
This year has been Lleyton’s healthiest year yet.
He attends a mainstream high school with his twin brother, competes in tenpin bowling tournaments and competed in a fun run earlier this year.
He also has a younger sister whom he dotes on.
Lleyton has always had a smile on his face, despite a lifetime of hospital visits and surgeries
”There’s still been a lot of setbacks but nothing compared to what he’s been through,’ Ms Giles told Daily Mail Australia.
‘He’s just the best kid ever.’
‘I’ve just done a nursing degree, which I never would have thought about doing if it wasn’t for Llleyton.’
Doctors are unable to give a prognosis about Lleyton’s long-term future.
‘All we can do is take everyday as one day at a time and ensure Lleyton has a normal as life possible,’ Ms Giles said.
Her father added: ‘You get scared about the future but I still live in hope that he will outlive me.’
Benji Marshall recently told Fox Sports that Lleyton Giles (pictured) put life into perspective
Lleyton (pictured as a baby) was just 18 days old when he underwent open heart surgery