Only a stomach tube pumping him full of calories for six-and-a-half hours every night kept Arthur Pearce alive.
Yet today, after nearly four years of being fed by machine, Arthur can list his favourite foods as cereal, pizza and chocolate buttons.
And his parents, Richard and Jillian, have nothing but praise for the specialist clinic in Austria that helped him to eat normally.
Arthur was born in April 2007 with the rare CHARGE syndrome, which affects one in 10,000 babies. It left him with a cleft lip and palate, facial nerve problems and an inability to breathe and eat normally. The condition required him to be wired to machines every night.
But now he is completely “tube-free”, according to his mum. “It is fantastic,” said Jillian of Broxburn. “He’s like a completely different little boy. We can hardly believe it when a few years ago we were being told that that was the way it was and it wouldn’t change.
“He loves his food – Weetabix is his favourite as well as chocolate buttons, and he’s a bit of a pizza fiend. But he’s adventurous, he’ll try most things.
“It’s wonderful being able to watch him eat when we never thought it would happen.”
Arthur was initially fed through a nose tube because of the cleft palate. When he was four months old a stomach plug was inserted and while doctors hoped a repair to his lip and nose would enable him to feed normally he had lost his natural ability to suck.
Jillian, 36, added: “When he was back in hospital to have his palate repaired, they discovered he had narrowed airways. So not only was he being tube fed, but he also had a tube in his nose to help him breathe. They later had to give him a tracheotomy.”
However, while Arthur might have outgrown some of his problems, he needed to be taught to eat. “He could suck things for the flavour,” said Jillian. “But he never swallowed or chewed anything. Physically he should have been able to but it was as though he was terrified of having solid food in his mouth.
“We were told that because he had the stomach tube he was getting what he needed, but we didn’t want that to be his life.”
In March 2009 the Pearces took Arthur to Austria for a three-week intensive course at the University Children’s Hospital of Graz.
“It is an amazing place,” said Jillian. “But it is expensive to go and we had to raise £45,000. I can’t believe how generous people were in helping us. Family and friends did so much it’s almost impossible to say how much we owe them and how much it was worth it for Arthur.”
While at the clinic Arthur pulled out his tracheotomy tube. “I was concerned because we’d always been told he needed it, but there had been no side-effects,” said Jillian.
“The doctors told us to keep it out and see how he progressed and he never looked back. ”
It did set back Arthur’s eating programme, however, but by last November he was eating a few spoonfuls of cereal.
In July this year he had his stomach tube completely removed. “That was an amazing day,” said Jillian. “Now he’s eating breakfast, lunch and dinner. He just loves to eat.”
Jillian added: “I’m glad we fought to get Arthur to Graz because it’s changed our lives.”