A teenager dices with death every time he goes to sleep – because of a rare condition that means he stops breathing every time he nods off.
Liam Derbyshire, 17, is one of a small handful of people in the UK living with congenital central hypoventilation syndrome.
Sufferers simply forget to breathe whenever they fall asleep due to a fault in the neurological reflex that controls breathing.
The condition, which affects less than 1,500 worldwide and is also know as Ondine’s Curse, means Liam has to be plugged into a life support machine and be monitored by a carer every night to keep him alive.
Doctors gave the adolescent just six weeks to live after birth, but the young man, from Gosport, South Hampshire, has defied the odds and will soon turn 18.
Liam’s parents Peter and Kim Derbyshire have to monitor their son round the clock
Ther 15-year-old sleeps in his ventilator mask, which is essential to keep him alive
Parents Peter and Kim are the main part of a team providing 24-hour care for Lian using specialised GPS equipment.
Mrs Derbyshire, 56, said: ‘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.
‘You are constantly on the alert and you worry that perhaps it’s the last time you are saying good night.
‘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.’
The school boy hugs his parents, who say they never get a good night’s sleep out of fear
We are constantly on alert
Liam’s condition means he has a very strict bedtime routine.
Mr Derbyshire usually takes charge of plugging his son into the ventilator machine and making sure everything is in order for the carer to sit and watch him sleep.
He 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.
‘Liam’s sleeping arrangements are the electric bed which has three positions in order to give him some quality sleep.
‘On the left hand side we have all of his ventilator equipment.
The idea is that a ventilator supplies positive pressure so that Liam is actually forced to exhale CO2, which normally you or I would [naturally].
Liam and his two cousins smile for the camera after playing football in the park
‘There is also a plate under the mattress that will sense any sort of fitting and then the only way of making sure that he is still breathing is via that type of mask.
‘Besides a medical room, it’s also his room and so you have got his PlayStation, the set TV and then Liam’s big forte – his Lego, which is all around the room.’
Liam can lose weight extremely quickly
Liam also struggles with a bowel condition, something unrelated to the syndrome, which means he must eat substantially large portions of food throughout the day to keep his body functioning.
Mrs Derbyshire said: ‘He lost a substantial part of his bowel when he was first born and now has an ileostomy bag, which he has had for many, many years.
‘Food is a big issue for Liam.
I have to plan every day and every way – the amount of food he goes through is quite terrifying.
‘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.
‘It can be quite terrifying when people say how much I actually have to spend to keep my son alive.
But I don’t have any choice.
‘It’s imperative that he has drugs with whatever he is eating or he can begin to lose weight extremely quickly.’
We won’t be around forever to look after Liam
There are two prominent medications that Liam still takes – Tegretol, to monitor his seizures, and liquid Imodium for his stomach.
His parents say his mental state is not the same as a typical 17-year-old.
Mr Derbyshire said: ‘Crossing the road and all of the other normal life skills are way behind the curve, if you will.’
The arty pupil from Gosport has a large, supportive family and attends a normal school
Mrs Derbyshire added: ‘It’s about trying to make him become more aware of what he is dealing with.
We are not going to be here forever.
‘You are trying to plan how he is going to cope on his own.’
Liam has a large family with an older brother, two sisters, three half sisters and eight nieces and nephews, and he spends a lot of time socialising with them.
He also manages to attend a normal school where he gets on well with both staff and students.
Mrs Derbyshire said: ‘His favourite hobby would have to be drawing – he has at least a thousand pens and also his Lego creations – he is fascinated with that.
‘He is quite arty and I think he gets that from me.
But his attention span isn’t always great and you have to make the most of the few minutes you get.’
<div class="art-ins mol-factbox floatRHS health" data-version="2" id="mol-b38b8dc0-7825-11e7-beba-338028487ec3" website teen who can never take a nap… because sleeping can kill him
