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.