The Teen Who Dies If He Falls Asleep

PETER DERBYSHIRE: He can breathe on his own during the day, but not when he goes to sleep. KIM DERBYSHIRE: Doctors believed he wouldn’t live for longer than six weeks. KIM DERBYSHIRE: It was like, ‘Oh right, okay. Game on!’ PETER DERBYSHIRE: You alright? LIAM DERBYSHIRE: Yeah. COMM: 17-year-old Liam Derbyshire suffers from an extremely rare condition that affects
less than 1,500 people worldwide. KIM DERBYSHIRE: Liam has a condition called Congenital Central Hypoventilation Syndrome
or Ondine’s Curse. Ondine was a fairy and he was cursed that if he ever fell asleep,
he would die, because he wouldn’t breathe. So we rely on a machine to make him breathe.
And without that machine, he wouldn’t be alive. COMM: Congenital Central Hypoventilation Syndrome or CCHS affects Liam’s central and autonomic
nervous system, which controls functions such as blood pressure, heart rate and breathing,
and can increase the risk of organ damage, especially to the brain. PETER DERBYSHIRE: If you ask me if I had a good night’s sleep, the answer is no. Not
since the day he was born, to be quite frank. KIM DERBYSHIRE: You don’t know from one day to the next, one minute to the next minute,
whether he is going to have a seizure, an episode, he is going to get tiered, he can
collapse on you at any time. I always remember one senior nurse saying to me many times,
‘It will get easier as he gets older.’ That is the biggest load of rubbish going
because it does not get easier. If anything, it gets harder. You go from having what you
think is a normal child to someone who actually gets rarer by the day, because he is surviving
so long as he is. COMM: Every night, Liam relies on a ventilator to keep him alive when he sleeps. A carer
is also on hand to watch over him, in case anything goes wrong. PETER DERBYSHIRE: Basically, Liam’s sleeping arrangements are the electric bed, which has
three positions in order to give him some quality of sleep. There is a plate underneath
the mattress, that will sense after 12 bursts of fitting, the idea’s that this ventilator
supplies positive pressure, so his lungs are forced to exhale. Ever anybody’s sort of
had the night dream where you falling off a cliff, that’s your body telling you your
phrenic nerve is alarming and it makes you take a deep breath. So, equated to that, that’s
his condition, he has that all the time. PETER DERBYSHIRE: It’s also his room, so we’ve got his PlayStation, his set TV, then
obviously Liam’s big forte is LEGO, which is all around the room. COMM: It’s currently not known how Liam’s condition will affect his learning abilities long term. PETER DERBYSHIRE: His mental state is unknown, to be perfectly frank, we don’t know which
is the spectrum, so where it starts and where it finishes. KIM DERBYSHIRE: He can build these incredible LEGO models and there is thousands and thousands
of parts, and yet he can put that all together. PETER DERBYSHIRE: He will check the LEGO website to see if there is any new one’s out and
you know full well what’s coming on either his birthday or Christmas list. INTERVIEWER: Which is your favourite one, Liam? KIM DERBYSHIRE: Liam is 17, nearly 18, so it’s a big birthday this year. He is an
annoying, grumpy teenager. So he is no different to any other teenager. But he does have a
sense of humour. He is very caring. He has got a really soft side. He has one older brother,
three half sisters. His two older sisters, they have both got children so he has got
eight nieces and nephews. RHYS GIBSON: Me and Liam, we do a lot of things together. We play with the trains, build LEGO. RHYS GIBSON: He loves trains. You ask him anything about trains, he’ll tell you, yeah. RHYS GIBSON: Like, some people don’t understand what he says, but I do. You just got to take
a bit more time and proper listen to what he says to understand and fully be aware of
what he is saying. PETER DERBYSHIRE: Life expectancy wise for Liam, nobody knows for sure. But…
KIM DERBYSHIRE: You cannot regret or have any remorse about the life he has had. Because
he wouldn’t have had it. If we would have listened to some of the doctors, by that,
he shouldn’t even be alive now. We never really thought we would get this far. PETER DERBYSHIRE: Liam’s living proof that there’s always hope. A future for Liam is
I would say it’s not going to be totally independent, but with us two, it’s going
to be as independent as we could possibly make it. KIM DERBYSHIRE: It’s 18 years since
we started this journey, you see. PETER DERBYSHIRE: Yeah, I don’t regret any day of it.

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