The Teen Who Dies If He Falls Asleep
30
August

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /


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.


100 thoughts on “The Teen Who Dies If He Falls Asleep

  1. I was diagnosed with sleep apnea at 15, I stop breathing about 30 times an hour. I use a CPAP machine, which looks pretty much identical to his "ventilator".

  2. Brave young man . Wish I could take it all away from him . God bless him take care buddie you are a strong young man 💙

  3. When I watch these vidioes I feel bad for these people like this one or a skin condition I just want to be there for these kinds of people

  4. My father has the Same disability. Its Not that extreme. He Just does Not continuesly breath. He got the Same machine/a machine Like this…..

  5. It honestly hurts seeing the people who comment prayers and God will heal you and seeing the other comments bashing religion and saying God wont do anything. I literally have a close relationship with God and he DOES answer my prayers in very obvious ways. So either u believe or not respect the fact that people who are across the world doing all they can do to heal this man through prayer. And anyone who disagrees needs prayer themselves.

  6. My dad has a machine like this this is because he had a lung disease then he got the machine to help him with breathing

  7. My dad is exacfly like this. He always needs a machine at night but not in the day. The noise it makes doesnt effect me or anyone else. Were just like "oh yea thats dads machine nothing bad is happening". I do worry when i hear weird noises im like "AM I GONNA DIE I DONT WANNA DIE" because i know alot about deadlyness, and i know that weird noises sometimes mean deadly things. Just want this guy to know if he sees this comment that there are more people like him even if the disease/disability is rare.

  8. It says The Teen who dies if he falls asleep,but his father said he can breath on his own until he goes to sleep. ..CLICKBAIT

  9. Man i feel bad for Liam because his voice talks so low… If they forgot… He dies i hope he lives.

  10. what if he has an above average IQ but a cant breath in all the way before having to breath out almost like a kid crying

  11. Here I complain about homework and losing my insta fan page. I am great full for what I have and these people are amazing and strong. They are a role model to our Society. They are different and learning to live. I hope they grow up to have a brighter future ❤️ all thoughts and prayers go to Liam ❤️

  12. When the dad said “ if you dream of falling off cliffs there might be a chance of having something “

    Me: I always dream about falling off a cliff….😦😧

  13. When ever I’m really worried of something and get panic attacks ( tbh I don’t get them, it just something bad that I think about), I fall asleep to forget and it works. If I had this, oh god. God bless him💕

  14. What a lovely family they are ! It must be so worrying having to live with that ! I was especially impressed with Liams nephew who clearly loves his uncle ! Xx

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