The boy who could die if he sleeps

Liam Derbyshire, 17, from Gosport in the south of England, suffers from an extremely rare medical condition that affects less than 1500 people worldwide. Congenital Central Hypoventilation Syndrome, also known as Ondine's Curse, causes those afflicted with the condition to stop breathing while they are sleeping. This means that as soon as Liam loses consciousness, his brain stops telling his body to breathe. "If you ask me if I’ve had a good night’s sleep, the answer is no, not since the day he was born to be quite frank," shares Peter, Liam’s father. Every night Peter turns on the ventilator that keeps Liam alive while he sleeps, ensuring that everything is order for the night. The Daily Mail reported that Liam's sleeping arrangements, that keep him alive during the night, consist of an electric bed that can be adjusted into three different positions – up, down, as well as the feet and head being able to be lifted independently of each other so as to give him the best quality sleep. Besides him sits his ventilator which applies positive pressure through a mask so that Liam is forced to exhale low-oxygen carbon dioxide (CO2). There is also a plate under Liam’s mattress that measures his body's stability. "You are constantly on the alert and you worry that perhaps it's the last time you are saying goodnight," say his parents who maintain a very strict bed routine for Liam. Liam is also afflicted with a second, debilitating problem. Kim, his mother, says that he lost a substantial part of his bowel when he was first born. As a result, he must eat substantially larger portions of food throughout the day to keep his body functioning properly. "I have a budget given to me by my husband for food of around £800 a month but I would be lying if I didn't say we actually spend more than that," the 56-year-old told The Mirror. Liam must regularly take Tegretol, to monitor his seizures, and liquid immodium for his stomach. Liam also suffers from a number of learning difficulties, and it is not known how his condition will affect his abilities in the long-term. However, Peter is optimistic, and says that you just have to be patient and listen carefully to what he says. The soon to be 18-year-old’s room is also filled with a PlayStation, a TV, and his large Lego set, which is a personal forte according to his mother. "He loves trains. You ask him anything about trains, he’ll tell you," adds Rhys Gibson, a nephew who is close to Liam's age. Liam has a large and close family made up of an older brother, three half-sisters and eight nieces and nephews, and he enjoys spending time with them when he is not working on his projects. "He is an annoying, grumpy teenager, so he’s no different from any other teenager. But he does have a sense of humour. He’s very caring, he’s got a really soft side," says Kim. She finds Liam quite artsy, but his attention span isn't always great. They have to make the most of the few minutes they get, she says. While Liam will never be able to live totally independently, when he was born doctors said that it was unlikely he would live beyond six weeks. This year he turns 18. It is hard not to keep hoping.