Watch the teenager who is suffering from Congenital Central Hypoventilation Syndrome
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A teenager was born with Ondine’s Curse also known as Congenital Central Hypoventilation Syndrome – a condition where a patient’s lungs stop functioning if he falls asleep.
This means 17-year-old Liam Derbyshire will die if he falls asleep. Due to the rare condition, he has to be plugged into a life support machine to keep him alive.
He is watched by a carer every night due to his rare disease.
When Liam, from Gosport, South Hampshire, was born, he was given only six weeks to live by doctors but he is going to turn 18 in a few months.
Liam’s parents, Peter and Kim, rely on a machine to make him breathe.
56-year-old Kim told Barcroft: “Central Hypoventilation Syndrome basically implies that when you sleep, your phrenic nerve doesn’t kick in so your brain doesn’t tell you to breathe. We rely on a machine to make him breathe and without that, he wouldn’t be alive. If he doesn’t breathe, he dies – that’s it.”
“His condition is extremely rare and if we would have listened to some doctors he shouldn’t be alive right now. He had the intent for life and so that became our job to make sure he was offered that.”
A carer watches Liam sleep while he is plugged into the ventilator machine. Liam’s dad Peter said: “If you ask me if I had a good night sleep the answer is no, not since the day he was born to be quite frank. You are constantly on the alert and you worry that perhaps it’s the last time you are saying good night.”
Liam has an elder brother, two sisters, and three half-sisters and he loves spending time with them.
“He is an annoying, grumpy teenager so he is no different to any other teenager but he does have a sense of humour and he is very caring – he’s got a really soft side”, his mother said.