Staying Awake My Life


Staying Awake

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Imagine feeling tired all the time.

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You going to get up, pet? You need to get up, honey.

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Losing control of your muscles and collapsing when you get the giggles.

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All right?

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Feeling different from all your friends

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and knowing they can never really understand.

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Some people just think it's just a normal problem, but it's not.

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Hoping that one day, you'll meet another child like you.

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Good morning, guys.

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There's nothing nine-year-old Harry loves doing more than going out on his horse.

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But a couple of years ago, something strange started happening.

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When I went out riding, if we were about two minutes

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into the ride, then I'd just fall asleep...

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Yeah, on the horse, and then I'd fall backwards.

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Bella!

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Harry has narcolepsy,

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a condition where you feel so tired during the day,

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that you cannot stop yourself from falling asleep,

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no matter what you are doing.

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Good boy.

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It's very scary. Cos I didn't realise I was actually doing it.

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It was just...

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It's almost like you pass out on him,

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so you fall asleep and then...

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you just go straight into... You just start dreaming instantly.

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Even if I had something to do

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and I was playing on something, I'd still go to sleep.

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I dunno, it's like it's controlling when I go to sleep and when I stay awake.

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Take your tablets, sweetheart.

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-Are you going to sleep in the lounge?

-Yes.

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Now, Harry doesn't fall asleep as much,

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because he takes tablets to keep him awake.

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But he still needs an afternoon nap after a morning on his horse.

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Darling, you've had your half an hour.

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Do you want a bit longer or do you want to wake up?

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Have a think about it, but your half an hour's up now, it's up to you.

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He definitely needs his sleep today.

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But he...

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Sometimes he just doesn't like to admit that he's actually tired.

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-Do you want to wake up now or not?

-I can't get up.

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Want to get up? Just wake up slowly, then.

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Matthew always times him for his half an hour.

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-Don't you, Matt?

-So I can play with him before it rains or something.

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Well, also you get bored waiting

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and you promise Harry that you'll only let him sleep for half an hour,

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cos sometimes Mummy leaves him to sleep for longer.

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-OK?

-Yes.

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-Nice sleep?

-Yes.

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Harry found out he had narcolepsy a year and a half ago, when he was eight.

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He has never met anyone else who has it.

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It makes me feel...different.

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It makes me feel...

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..like there's no-one else really that...

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..is completely like me,

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who can understand what it's like to have it.

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Some people just think it's just a normal problem, but it's not.

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Although Harry doesn't know it, 150 miles away in Nottingham,

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there's another boy who understands just how he feels.

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It's not just tired. It's literally exhausted. That's what it is,

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it's so exhausted that you HAVE to go to sleep.

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13-year-old Luke was diagnosed with narcolepsy two years ago.

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Still tired though.

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No-one would, like, take me seriously.

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Children used to laugh at me and think,

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"Oh, I'll have that, I want to go to sleep all the time in lessons.

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People still say that.

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Luke has lived with narcolepsy for so long,

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that he thinks he can help younger children like Harry to cope.

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If they just know someone else has got it and someone else

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can give them advice that it is, like, not just them

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and they're not just different

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and it's just them who fall asleep and that,

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it might make them feel a little bit better.

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Falling asleep during the day is just one of the things

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that Harry has to put up with.

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-How much do you want, Harry?

-I'll have two slices just for now.

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Even laughing is a problem.

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When he finds something really funny and he laughs hard,

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his muscles go all weak and he collapses.

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When this first started happening, Harry's parents filmed him,

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so they could show his doctor.

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When I looked at myself, I thought, "Is that really what it looks like?"

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And it's so...

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I really didn't like it. It was really scary.

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If I start laughing, if someone makes me laugh,

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I will lose control of my muscles and sometimes collapse on the floor,

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or just can't move and then I've got to sit and wait,

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for ten seconds or so until I've got my energy back

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and I can stand back up again.

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As well as taking tablets to keep him awake during the day,

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Harry also takes medicine to stop his collapsing attacks.

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But he does still get them,

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especially when he's messing about with his brother, Matthew.

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-All right?

-What happened there, then?

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All right?

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OK?

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Put you down, then.

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My brother, he made me laugh, and it's basically, just like, suddenly,

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I lose control of all my muscles in my legs and my arms,

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and I flop over and my head goes down like that,

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but it's nothing serious, it's not like I'm really injured,

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it's just... But I can hurt myself sometimes when I'm doing it.

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If it gets really bad, I can't open my eyes at all or it's hard to breath.

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-But it is quite traumatic to see it, isn't it, Harry?

-Yeah.

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When your muscles go all weak like this, but you are fully awake,

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it's called cataplexy.

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The attack can last several minutes or just a few seconds.

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Cataplexy is something that Luke knows all about.

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The cataplexy attacks would happen at any time or any day, normally,

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but the worst ones would happen when I laughed,

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so it would be brought on by strong emotions,

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which obviously cos I am quite a cheerful guy,

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a positive guy, would be laughing.

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The solution that I found was don't laugh.

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So for about a year, I didn't laugh at all,

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unless something was really, really funny.

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But now, Luke only gets very mild cataplexy

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and doesn't usually drop to the floor.

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Oh...

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I can't even move.

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-Go and sit down, mate.

-It's not as bad now.

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I did have to change who I am, just to deal with something,

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but now, I can be myself again, which is pretty good.

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Well, more than pretty good!

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In Slough, ten-year-old Kailan also knows how embarrassing

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falling to the floor laughing can be.

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Like Luke, he was diagnosed with narcolepsy two years ago.

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Sometimes, I just dropped to the floor for no reason.

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I'd be wondering why that happened.

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Like, my legs would just drop to the floor,

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like they're feeling OK and then I'd just be paralysed.

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Last year, Kailan was like laughing a lot and a lot and a lot

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and falling down.

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He went like that on the table and his face went all red.

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And he starts crying and stuff, but he's crying because he's laughing.

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Children like Kailan, Luke and Harry

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have a much smaller amount of a certain chemical in their brain than other people.

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But no-one is sure what causes that to happen.

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Even at the sleep clinic in Oxford where Kailan is being treated,

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he has never met another child with narcolepsy.

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It's usually adults who have it.

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So, it's not long that I saw you last, isn't it?

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Just a few weeks ago. How have you been?

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-I dunno. My mum knows.

-Last time, sleep was a big problem,

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sleep was very disturbed.

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Sleep is still pretty disturbed.

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'It is so scary. Because some of the symptoms are so difficult

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'for children to explain to parents.'

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If your sleep is disturbed, you're having nightmares,

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you don't immediately think of narcolepsy.

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Even the cataplexy, you don't have to fall to the ground.

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It may just be a wobbly feel and children may find this

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very difficult to explain, so it takes some time to be able

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to get through the full history, to make the clinical diagnosis.

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We've not really had the arms and the legs.

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Kailan, have you had that lately?

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Not in a very good mood today, are you, Kailan?

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Shut up. You're going to make me laugh!

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For Luke, it was hard to convince anyone that he had a problem.

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When we first went to the doctors and that,

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they just thought it was hormones and teenager...

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Just normal for a kid my age.

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When the doctor told me it might be narcolepsy,

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I burst into tears and my mum was like, "It's OK,"

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and I explained I wasn't crying because I was that sad,

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it was just relief that someone finally believed me.

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Even though Harry sleeps a lot during the day,

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he finds it difficult to get a good sleep at night.

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Tonight, he is very restless and is woken up by a bad dream.

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HE CRIES

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I had quite a lot of nightmares...

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I still do now, sometimes.

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I wake up screaming, or, like yesterday, I was crying,

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because there was something emotional that happened in my dream.

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Luke also knows how terrifying the nightmares that come with narcolepsy can be.

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It made me feel quite insecure.

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I used to associate stuff with ghosts and that

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and dad would be like, "There's no such thing as ghosts,"

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but I'd think, "So why's it only happening to me?"

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Cos I thought it was real. I'd be like,

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"Why is no-one else seeing this?"

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You ready for your tablets?

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Come on, it's bedtime.

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-I'm just going to defeat one more person.

-No, Kailan. No, no.

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Kailan takes a tablet at night to help him sleep.

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-Sit up for your tablet, please.

-Don't want my stupid tablet, Mum.

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-Cos you're getting tired.

-No, cos I hate you.

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Then in the morning, all the boys take tablets to keep them awake.

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Cheers.

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All right. You've got about ten minutes, yeah?

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Tablets in hand.

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HE MUMBLES SLEEPILY

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Hmm?

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I put it on my lip

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and then, when I'm ready...

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..I flip it in and then swallow it.

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But the effects of the tablets do wear off as the day goes by.

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And that's when moods can change.

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One minute, Harry's playing with his brother, Matthew.

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The next, he's tired and grumpy.

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He ruins everything that I have to do.

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He's only trying to make you laugh so you can't play with him, isn't he?

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-Yeah, exactly.

-Oh, come on.

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We're going inside. Come on.

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When he's playing football, if he's around in the midfield,

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then he'll probably just fall over if someone makes him laugh.

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I can't, cos he's always doing stuff to make my problem worse.

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-Does somebody hold him up when he laughs?

-No.

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You hold him up though, don't you, when he laughs sometimes?

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It's a lot of pressure for Matthew.

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He worries about him all the time.

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You can see it's obviously affecting how he feels.

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You do love him really, don't you?

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It's nice that you care about him.

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Eh? Eh?

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-You do care about him, don't you?

-Yeah.

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You're a good brother to him, really, aren't you?

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Cos you're always looking out for him, aren't you?

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-Can I go and get a drink?

-Of course you can, darling.

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The tablets the boys take do help to control their narcolepsy.

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But like all medicine, they can sometimes cause other problems.

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These are known as side effects.

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At night time, I get really hungry.

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I don't know why. My mum says it's possibly because of the medicine.

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And I get up, maybe get a pancake...

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crisps, or ask for noodles, things like that.

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Noodles at this time of night would be really crazy.

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I keep getting up and sometimes my sister or Mum

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can't get to sleep, cos they keep hearing me walking about.

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It's the middle of the night

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and Kailan has been asleep for two hours.

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He had a snack before he went to bed, but he's already hungry.

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It's five past 12 and the munchy man is hungry.

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He likes his munchies at night.

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It is his first time, but hopefully, it'll be the last for the night as well.

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He has to make his belly feel full.

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When Kailan goes looking for food in the night,

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his mum always gets up too.

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Come on, then. You eat up before you go to bed.

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She doesn't like him to eat his food on his own,

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in case he falls asleep and chokes.

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-Back to sleep.

-Kailan, go to sleep.

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Straight back to sleep.

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What if there was a break?

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-OK, night-night.

-Night, Mum.

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Mum, Mum-Mum. Mmmm.

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Three hours later, Kailan is hungry again.

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Even though he is exhausted, the urge to eat is overwhelming.

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It does affect me, but I don't notice it.

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To me, I don't notice anything. I just think I'm normal, because I can't tell.

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What's that face for?

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But getting up with Kailan up to four times a night

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really takes its toll on Kailan's mum.

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Harry, night-night.

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You try and sleep well tonight, OK?

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Like Kailan, Harry also used to get up in the night to eat.

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But his doctor told his parents to take drastic action

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to put a stop to Harry's night-time munchies.

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I can get hungry and if I can find anything, I will snack on it.

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You do get hungry at night, don't you?

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I still do a bit but not as much,

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because Mummy's locked up the kitchen,

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so if I try and get in, I can't.

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And she's locked the end door as well, so I can't get in that either.

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Initially, he was still trying to get in. In the middle of the night,

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we could hear him trying the door.

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But since then, he's got used to it.

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So he will very often still get up,

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but very often he'll just get back to sleep

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and carry on through the night.

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It's helping a lot. I get a better sleep at night,

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because when I'm awake, I'll be awake for 15 minutes,

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but I'd wake up about five times,

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so it'd be altogether about an hour I'd be awake.

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But now, if I wake up, I know I can't get in so I'll just...

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Cos I'm still a bit woozy where I've just woken up,

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I can just go straight back to sleep again.

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As a parent, you feel it's a really tough thing to have to do,

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locking your children out of the kitchen

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is quite an extreme thing to do,

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but in the circumstances, it's definitely for the best.

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After a night tossing and turning,

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getting up in the morning really is a struggle for Kailan.

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I'm trying to get Kailan up for school.

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He's had his breakfast, but fallen back to sleep,

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so I'm going to call him again.

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This is a regular routine.

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I shall eat mine and then go back in and call him again.

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Hopefully, we'll succeed.

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You need to get up for school, honey.

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-Stretching!

-Don't shout.

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Sorry, Mummy. Stretching, Mummy.

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Angry cos when you wake me up, it makes me angry.

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Sometimes with me, even if my mum tells me to get up, I can't.

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I'm too tired to literally get up.

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And I'll have to stay in bed for a little bit more,

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to get energy to be able to get up.

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Come on. Don't get upset with me.

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HE MOANS

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I feel sorry for her, because I'm being nasty for no reason

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and I don't mean it.

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Sometimes I go tell her "I'm sorry, I don't mean it," and she says "OK."

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-You've got to let me sleep.

-But it's half eight...

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you're supposed to be in school in a quarter of an hour.

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You haven't done your clothes, your face...

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-Cos you're in here.

-OK. So, you're going to get dressed now?

-When you go away.

-OK.

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Eventually Kailan's mum gets him out of the house and in the car.

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But he's not awake for long.

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Harry has told all his friends about his narcolepsy

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and most children at his primary school know about it.

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It's nice, cos I've got a lot of support from Harvey

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and some of my other friends as well.

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So it's quite nice to have someone to...help.

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When he gets cataplexic,

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I sometimes think he's going to like suddenly fall over.

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And I get a little bit scared.

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Harry feels so relaxed about people knowing about his condition

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that after lunch, he is quite happy to go

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and have a lie down in the staff room.

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I had a really bad night last night.

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I had a really bad dream.

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Well, a lot of...

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My mum didn't have a good night either,

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cos I kept calling her down, because I had really bad dreams.

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So, hopefully I'll get to sleep today.

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So while the rest of Harry's class are reading,

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Harry has a little snooze.

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He does extra reading at home to make up for it.

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Things are a bit different for Luke.

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Until recently, he had only told one or two people.

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Very few children at his secondary school know.

0:21:550:21:58

I don't have a problem with people thinking I'm different,

0:21:580:22:02

because I am different, a lot different

0:22:020:22:04

but it's...just the questions that I don't want to answer.

0:22:040:22:12

Luke relies on his tablets and will power to keep himself alert at school,

0:22:150:22:20

but by the last lesson, he's really struggling.

0:22:200:22:24

-I've been on the first page for the past 15 minutes.

-Do you just keep reading it over and over?

-Yes.

0:22:240:22:30

Do what you can.

0:22:300:22:31

I try my hardest to get through the day at school and then,

0:22:310:22:36

as soon as I get in the car to drive home,

0:22:360:22:42

for that split second, I stop trying,

0:22:420:22:45

I'll fall asleep, ten seconds, I'll be asleep.

0:22:450:22:50

Tired and grumpy.

0:22:500:22:53

-Dad, Ryan and Georgie's coming tonight.

-Shut up.

-Dad.

0:22:530:22:56

As soon as I've had that sleep,

0:23:000:23:02

I will still go in the house and have another sleep, for a good hour or two hours.

0:23:020:23:07

Which is a daily basis.

0:23:090:23:11

Usually he'll take his blazer off at least, but this time,

0:23:110:23:15

he's just gone to the bedroom and gone to sleep.

0:23:150:23:17

So... But yeah, it's normal.

0:23:170:23:21

He can't think of anything when he's like that,

0:23:210:23:24

he just has to go to sleep.

0:23:240:23:25

He'll have his tea a bit later on, probably on his own,

0:23:250:23:27

because everybody will have eaten by then.

0:23:270:23:30

Harry, Kailan and Luke have had to learn to cope with narcolepsy on their own.

0:23:300:23:35

It's been hard not knowing anyone else.

0:23:350:23:38

But today, all that's going to change.

0:23:410:23:45

I feel quite happy and excited about seeing the others.

0:23:450:23:51

Hello, Harry. Give me a high five.

0:23:530:23:55

-Look, it goes in height order.

-Yeah!

0:24:030:24:06

-Luke, when you get nightmares, do you ever wake up saying stuff?

-Yeah.

0:24:060:24:11

-Screaming and that?

-Yeah. It's actually quite scary.

-Mmm, very.

0:24:110:24:15

-Sit here.

-Let's go in size order.

0:24:290:24:31

-This is what I'm on.

-Is that your tablet?

0:24:340:24:38

My tablets are the same size, but a different colour.

0:24:390:24:43

Do you take two?

0:24:430:24:44

I don't have that, I only have one for...

0:24:440:24:46

To wake up... One to make me fall asleep and one to make me wake up.

0:24:460:24:51

No, I have one in the morning, one at lunch and one in the evening, which is like a capsule.

0:24:510:24:58

-It's kind of rubbery outside.

-Yeah, yeah.

0:24:580:25:02

-When I get cataplexy and I'm laughing, my eyes sort of go like that.

-Yeah!

-Yeah, they do.

0:25:020:25:07

But when you just get narcolepsy, they say that your eyes are closing,

0:25:080:25:12

but they're like going like that, but you don't recognise it,

0:25:120:25:15

you think you can see everything perfectly and they say it's closing.

0:25:150:25:19

-Yes, cos like, you get sick from sleeping.

-I think it's boring - sleeping.

-It is.

0:25:190:25:26

When you were younger and you had narcolepsy and cataplexy,

0:25:260:25:30

was there anything different about when you're older?

0:25:300:25:33

-You get more used to it.

-Yeah, it's easier to cope with.

-Well...

-In a way.

-Yeah.

0:25:330:25:40

I don't think I have narcolepsy, I don't feel any different.

0:25:400:25:45

-See you, Harry.

-See ya.

-All right, see you.

-See ya!

0:25:450:25:48

Meeting the others has been quite helpful

0:25:480:25:51

and nice, to know someone that has narcolepsy.

0:25:510:25:56

It was very good.

0:25:560:25:57

We shared our feelings, so when we were asleep, what dreams we get...

0:25:580:26:03

When you suddenly wake up, what it's like.

0:26:030:26:06

Yeah, we talked about cataplexy, narcolepsy, illusions,

0:26:060:26:11

all sorts and it was fun. I liked it.

0:26:110:26:15

Even though they are a bit younger than me,

0:26:150:26:18

having that one thing in common has helped to kind of...

0:26:180:26:22

Because you already know them, kind of thing... It's like you're already mates.

0:26:230:26:28

Good to meet you. 'Hopefully they can keep in touch.

0:26:280:26:32

'And as they grow up, they can help each other with their conditions'

0:26:320:26:35

and give each other a bit of support, which will be really nice.

0:26:350:26:39

I did feel like I was on my own at first,

0:26:390:26:43

-but now I feel there's more people like me.

-Been a pleasure meeting you.

0:26:430:26:49

There is no cure for narcolepsy.

0:26:530:26:56

But Luke, Kailan and Harry's new-found friendship will help them to cope.

0:26:560:27:00

They've already had another day out together

0:27:000:27:03

and are keeping in touch online.

0:27:030:27:05

To be honest, I don't think about the future,

0:27:050:27:08

what I do is, think about now and deal with it.

0:27:080:27:11

One day at a time. That's what I'd say. One day at a time.

0:27:130:27:16

When I'm older I might be able to cope with it better,

0:27:170:27:22

because I will be...

0:27:220:27:26

more evolved and more used to it.

0:27:260:27:30

# Oh, my life

0:27:310:27:34

# Is changing every day

0:27:340:27:38

# In every possible way... #

0:27:380:27:41

Subtitles by Red Bee Media Ltd

0:27:410:27:44

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0:27:440:27:46

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