Australia: 'The doctors are as stunned as we are': Terminally-ill child who was told he had months to live defies the odds - and continues to inspire his footy star mates - PressFrom - Australia

Australia 'The doctors are as stunned as we are': Terminally-ill child who was told he had months to live defies the odds - and continues to inspire his footy star mates

19:55  21 september  2019
19:55  21 september  2019 Source:

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a person posing for the camera: Terminally-ill teen Lleyton Giles, (pictured) still continues to defy the odds© Provided by Associated Newspapers Limited 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.

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I had just explained that I am considered terminally ill , even if we don’t speak about it. It was a reminder that life is fragile and we are promised nothing. It’s a good philosophy to live by. But he like you was a very upbeat realistic thinker who I know how what he would be saying to me every day

His remarks ignited a new row over doctors ' role in end of life care. On 18 July peers will debate a private member's bill proposed by the former Labour minister Lord Falconer which wants terminally ill adult patients who have less than six months to live and who are mentally competent to be able to

'If you saw him walking down the street, you wouldn't even think he was terminally ill.'

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Many terminally ill patients who are in the final stages of their lives have requested doctors to aid According to Kevorkian’s attorney, “[Dr. Khalili] was a pain specialist; he could get any kind of pain To give competent, terminally - ill adults this necessary right is to give them the autonomy to close the

My friend Sharon has been living with chronically- ill children for eighteen years now. Be a good listener. Even if you have no clue about the medical terms they are throwing around – feel free to ask. Remember, she will still need you in a month , three months , six months , even next year.

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.'

Hospital has been Lleyton's second home his entire life.

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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 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.

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.'

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His mother says: “I am fighting for my child ’s life. He is a sick child , but he is coping. But there are always outliers who are said to have beaten the odds when really there was a small chance of survival all along. Could he have had chemotherapy, surgery, experimental drugs in the past three months ?

"From each according to his ability, to each according to his needs" is a slogan popularised by Karl Marx in his 1875 Critique of the Gotha Program.

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.

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.

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.'

Mr Giles is extremely grateful for the strong support network behind the family which has been vital in Lleyton's survival.

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Under the proposals, a terminally ill person would have been able to request assistance with ending his or her life if diagnosed as having less than six months to Ahead of the debate, MPs were being lobbied heavily by both sides. This week, a group of senior doctors wrote to the Guardian saying the

For the terminally ill child , their parents and their doctors , this dilemma is a daily reality. As a doctor , I am thankful that progress is being made to address the anguish of people, children included, who find We are rightfully uncomfortable when arguing about the suffering and death of children .

'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.

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And a child who is very emotional can’t think rationally about his behavior. Parents who come see me for parent training often tell me that they have tried timeouts and they do not work with their Moreover, if the child leaves time-out before his time is up, he must go to a backup time-out area.

'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.

''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.'

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