Our Teen Who Dies If He Falls Asleep | Living Differently

Our Teen Who Dies If He Falls Asleep | Living Differently

He can breathe on his own during the
day, but not when he goes to sleep. Doctors believed he wouldn’t
live for longer than six weeks. It was like, “Oh, right.
OK. Game on.” You all right? Yeah. Give me your foot, mate. 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. OK? Comfy? 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. You don’t know from
one day to the next… one minute to the next, whether
he’s going to have a seizure, an episode, he’s going to get tired, 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’s surviving
so long as he is. Basically, Liam’s sleeping
arrangements are the electric bed, which has three positions.
In order to give him some quality of sleep,
there’s a plate underneath the mattress that will sense
after 12 bursts of fitting, the idea is that this ventilator
supplies positive pressure so that his lungs are forced
to exhale. If ever anybody has had
the night dream where you’re falling off a cliff, that’s
your body telling you your phrenic nerve is alarming and it makes you take a deep breath. So equate it to that, that’s his condition and
he has that all the time. It’s also his room, so you’ve
got his PlayStation, his sat TV and then obviously Liam’s big
forte is his Lego… which is all around the room. His mental state is unknown, to be perfectly frank, we don’t know which is the spectrum, where it starts and where it
finishes. He can build these incredible Lego
models and there’s thousands and thousands of parts and yet
he can put that all together. He’ll check the Lego
websites to see if there’s any new ones out
and you know full well what’s coming on either his birthday or
Christmas lists! HE LAUGHS Which is your favourite one, Liam? Liam is 17, nearly 18, so it’s a big birthday this year. He’s an annoying, grumpy teenager, so he’s no different
to any other teenager! But he does have a sense of humour, he’s very caring, he’s got a really soft side. He has one older brother,
three half sisters and his two older sisters, they’ve both got children, so he’s
got eight nieces and nephews. Me and Liam, we do a lot
of things together. We play with the trains,
build Lego. Wasn’t it the Flying Scotsman?
Yeah. He loves trains. You ask him
anything about trains, he’ll tell you. Yeah. Like, some people don’t
understand what he says, but I do, you’ve just got to
take a bit more time and proper listen to what he says
to understand and fully be aware of what he’s saying. Life expectancy wise, for Liam, nobody knows for sure. But… You cannot regret, or have any remorse about
the life he’s had, because he wouldn’t have had it. If we’d have listened to
some of the doctors, by rights, he shouldn’t even be alive now. We never really thought we’d
get this far. Liam is living proof
that there’s always hope. The future for Liam, I would say, is not going to be totally
independent, but with us two, it’s going to be as independent
as we could possibly make it. It’s 18 years since we started
this journey, you see. Yeah, I don’t regret any day of it.

100 Replies to “Our Teen Who Dies If He Falls Asleep | Living Differently”

  1. I thank god a million times that I don’t have a single disease. I pray for everyone, Jesus was in my dream once a few years ago, it was a miracle. He told me in my dreams that when I turn 10 at 3:00PM august 17 , the statue I had in my room of it will move. AND IT HAPPENED. What a miracle

  2. He obviously sleeps, because you literally die if you don’t sleep… So this title is click bait bullshit?
    Edit: Yes, the machine helps him breathe… Click bait bullshit tidal.

  3. my dad has the exact same condition, he has to wear a mask when he sleeps, yet if he sleeps he has a 87% chance on dying and he has had this condition since he was 14, he’s now 43, he has slept without his ventilator before, and has survived.

  4. I’ve had a very bad day today for no reason in particular other than my current circumstances. Seeing a smile on this kids face puts things in perspective. Thank you for brightening my day Liam

  5. Right I'm going to say something you may find offensive but if a person has a health condition with this kind of severity they shouldn't be able to have a baby because it could cause the baby to suffer as he does and that's not right

  6. He is so innocent
    If he live more years to come then he can really become a good example for those who loose all hopes to live further in their life
    All the best Liam for your coming future
    Your goodwishers

  7. Lord heavenly Father in the name of Jesus Christ be with this young man guide him and protect him heal him from the top of his head down to the souls of his feet in Jesus Christ name Amen

  8. dont go hatting on me but i hope he falls asleep away from the pain away from the sufering live isnt fair hope he has a beter live in the after live

  9. For starters I thought I found the first that would have no fear of freddy kruger. But no, he does sleep with a respirator.

  10. The thing is, that in the past people like him didn't survive. But now, when doctors can help most of the people, they can. But I was wondering that what will happen to them, if they parents wont be with him anymore?

  11. Go Liam!! What a sweet boy, and so smart putting together those legos! I can’t do that! I lose my patience so that’s says a lot. And it rocks he has such a sweet and loving nephew who genuinely wants to understand him and be his friend! ❤️

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