When Liam Derbyshire was born 11 years ago, his parents were given the heartbreaking news that he would probably only survive for six weeks.
Liam suffers from central hypoventilation and stops breathing every time he falls asleep. Each night he is put on a life support machine to keep him alive whilst he slumbers.
His family, from Gosport, Hampshire, have installed emergency electricity measures in their home in case of a power cut, and their bills have run into thousands. Liam, who is also in remission from cancer, has amazed both his family and medics.
His mum, Kim, 50, said: 'Every day the doctors are amazed at how fit he is. He has defied all the odds.
'We have been very fortunate with Liam that he has had the life that he's got. We always wanted him to have as normal a life as we could give him. He's exceeded all expectations.
'We have to keep a very close eye on him. He goes from being totally active and then his heart rate slows right down. He is so full of life, he's fantastic. He's constantly smiling and laughing. He's very affectionate. He has all the normal traits of a lot of kids. Every day of his life is a bonus.'
Liam's doctor, Dr Gary Connett, from Southampton General Hospital, Hants, said the condition is extremely rare: 'Liam was the first patient I diagnosed with central hypoventilation when I came to this hospital 12 years ago. The really unusual thing about Liam is that he had a cancer growing inside of him and he had a problem with his bowel. I couldn't find any reports of children who had all these problems and survived. It's quite amazing.
'I would say he's unique worldwide.'