A little boy is facing a lifetime of never eating because he suffers from a one-in-135 million genetic condition.
Keaton Foale, five, has never even enjoyed a packet of sweets or crisps - and never will.
He has been diagnosed with the incredibly rare Congenital Disorder Glycosylation Type Two, which means he can't eat food normally.
The youngster has to be fed through a tube into his stomach that he will need for the rest of his life.
Rare: Keaton Foale, 5, pictured with mother Claire Plummer, can't eat food like most of us and has to be fed through a tube
His condition has baffled doctors around the world. It was first discovered when he began refusing his bottled milk at three months old.
They had to staple the top of his stomach when he was just six months old to save his life.
Instead, they put in a special feeding tube that delivers a high-calorie milk mixture to his stomach four times a day in 50-minute sessions.
His mother, Claire Plummer, became frantic with worry after her son first developed the rare symptoms.
Claire, 29, who is a full-time mother to Keaton, his sister Bethany, 10, and eight-year-old brother Dylan, said very little was known about Keaton's rare genetic disorder.
She added: 'As his weight plummeted, doctors put Keaton on tube feeds through his nose - but even this didn't stop him vomiting.
Vulnerable: Keaton pictured in hospital shortly after his birth at 24 weeks when he was just four inches tall
'Doctors were forced to insert a feeding tube directly into his stomach.
'When tests were carried out using a kind of X-Ray food machine, to find out why Keaton couldn't eat, doctors were stunned.
'The milk was simply stuck in his throat - he couldn't swallow.
'The dribbles of milk that did get past his throat either went to his stomach, making him vomit or ended up in his lungs.
'I was so worried when I first heard about his condition.
'For years the doctors couldn't diagnose what was wrong with him and even now, knowing that he suffers from such a unique condition is little consolation really.
'Doctors still aren't sure about all the things that are wrong with my son.
'There are only a few people in the world who actually deal with CDG because it is such a unique condition.
Glycosylation Type Two is a genetic disorder which is not hereditary and can cause a spectrum of disturbing symptom, including cancer and deafness.
As well as not being able to eat, Keaton also suffers from internal bleeding on a regular basis and loses several pints of blood every year. Sometimes he bleeds as often as two or three times a week.
Keaton was born at just 24 weeks and was just four inches tall - the length of a Biro pen - when he was delivered, but doctors believe this has had no bearing on him developing the condition.
In the first year of his life alone, he battled through jaundice, anaemia and blood infections and had laser-eye surgery to stop him going blind.
After years of tests and problems he was finally diagnosed with CDG at the age of three-and-a-half. The life expectancy of sufferers varies from 3 months to 60 years.
Even now he struggles to get up and down stairs by himself, and has difficulties with his speech.
American Dr Hudson Freeze, one of the few experts in the condition, said Keaton's was the most unusual case he had encountered.
He said: 'With Type Two CDG, which he suffers from, we don't yet know specifically what gene is at fault.
'As yet there is no cure for Type Two and research is ongoing.
'There are only a few people worldwide who suffer from CDG Type Two and Keaton's condition is particularly extreme.'
