0:00:18 > 0:00:21Imagine feeling tired all the time.
0:00:21 > 0:00:24You going to get up, pet? You need to get up, honey.
0:00:24 > 0:00:28Losing control of your muscles and collapsing when you get the giggles.
0:00:28 > 0:00:29All right?
0:00:29 > 0:00:32Feeling different from all your friends
0:00:32 > 0:00:36and knowing they can never really understand.
0:00:36 > 0:00:40Some people just think it's just a normal problem, but it's not.
0:00:40 > 0:00:45Hoping that one day, you'll meet another child like you.
0:00:58 > 0:01:00Good morning, guys.
0:01:00 > 0:01:05There's nothing nine-year-old Harry loves doing more than going out on his horse.
0:01:05 > 0:01:10But a couple of years ago, something strange started happening.
0:01:10 > 0:01:13When I went out riding, if we were about two minutes
0:01:13 > 0:01:16into the ride, then I'd just fall asleep...
0:01:16 > 0:01:19Yeah, on the horse, and then I'd fall backwards.
0:01:20 > 0:01:22Bella!
0:01:22 > 0:01:24Harry has narcolepsy,
0:01:24 > 0:01:27a condition where you feel so tired during the day,
0:01:27 > 0:01:30that you cannot stop yourself from falling asleep,
0:01:30 > 0:01:32no matter what you are doing.
0:01:32 > 0:01:33Good boy.
0:01:33 > 0:01:38It's very scary. Cos I didn't realise I was actually doing it.
0:01:38 > 0:01:40It was just...
0:01:41 > 0:01:45It's almost like you pass out on him,
0:01:45 > 0:01:48so you fall asleep and then...
0:01:48 > 0:01:52you just go straight into... You just start dreaming instantly.
0:01:54 > 0:01:56Even if I had something to do
0:01:56 > 0:02:00and I was playing on something, I'd still go to sleep.
0:02:00 > 0:02:05I dunno, it's like it's controlling when I go to sleep and when I stay awake.
0:02:05 > 0:02:08Take your tablets, sweetheart.
0:02:08 > 0:02:10- Are you going to sleep in the lounge?- Yes.
0:02:10 > 0:02:13Now, Harry doesn't fall asleep as much,
0:02:13 > 0:02:16because he takes tablets to keep him awake.
0:02:16 > 0:02:21But he still needs an afternoon nap after a morning on his horse.
0:02:24 > 0:02:26Darling, you've had your half an hour.
0:02:28 > 0:02:31Do you want a bit longer or do you want to wake up?
0:02:33 > 0:02:37Have a think about it, but your half an hour's up now, it's up to you.
0:02:37 > 0:02:39He definitely needs his sleep today.
0:02:39 > 0:02:40But he...
0:02:40 > 0:02:46Sometimes he just doesn't like to admit that he's actually tired.
0:02:46 > 0:02:51- Do you want to wake up now or not? - I can't get up.
0:02:51 > 0:02:54Want to get up? Just wake up slowly, then.
0:02:56 > 0:02:59Matthew always times him for his half an hour.
0:02:59 > 0:03:04- Don't you, Matt?- So I can play with him before it rains or something.
0:03:06 > 0:03:07Well, also you get bored waiting
0:03:07 > 0:03:11and you promise Harry that you'll only let him sleep for half an hour,
0:03:11 > 0:03:14cos sometimes Mummy leaves him to sleep for longer.
0:03:14 > 0:03:15- OK?- Yes.
0:03:17 > 0:03:19- Nice sleep?- Yes.
0:03:21 > 0:03:26Harry found out he had narcolepsy a year and a half ago, when he was eight.
0:03:26 > 0:03:30He has never met anyone else who has it.
0:03:30 > 0:03:36It makes me feel...different.
0:03:36 > 0:03:37It makes me feel...
0:03:39 > 0:03:42..like there's no-one else really that...
0:03:45 > 0:03:47..is completely like me,
0:03:47 > 0:03:51who can understand what it's like to have it.
0:03:52 > 0:03:58Some people just think it's just a normal problem, but it's not.
0:04:02 > 0:04:06Although Harry doesn't know it, 150 miles away in Nottingham,
0:04:06 > 0:04:10there's another boy who understands just how he feels.
0:04:12 > 0:04:18It's not just tired. It's literally exhausted. That's what it is,
0:04:18 > 0:04:22it's so exhausted that you HAVE to go to sleep.
0:04:22 > 0:04:2813-year-old Luke was diagnosed with narcolepsy two years ago.
0:04:28 > 0:04:30Still tired though.
0:04:30 > 0:04:32No-one would, like, take me seriously.
0:04:32 > 0:04:35Children used to laugh at me and think,
0:04:35 > 0:04:39"Oh, I'll have that, I want to go to sleep all the time in lessons.
0:04:39 > 0:04:40People still say that.
0:04:41 > 0:04:44Luke has lived with narcolepsy for so long,
0:04:44 > 0:04:47that he thinks he can help younger children like Harry to cope.
0:04:48 > 0:04:51If they just know someone else has got it and someone else
0:04:51 > 0:04:58can give them advice that it is, like, not just them
0:04:58 > 0:05:02and they're not just different
0:05:02 > 0:05:06and it's just them who fall asleep and that,
0:05:06 > 0:05:08it might make them feel a little bit better.
0:05:08 > 0:05:12Falling asleep during the day is just one of the things
0:05:12 > 0:05:14that Harry has to put up with.
0:05:14 > 0:05:17- How much do you want, Harry? - I'll have two slices just for now.
0:05:17 > 0:05:19Even laughing is a problem.
0:05:19 > 0:05:22When he finds something really funny and he laughs hard,
0:05:22 > 0:05:25his muscles go all weak and he collapses.
0:05:26 > 0:05:30When this first started happening, Harry's parents filmed him,
0:05:30 > 0:05:32so they could show his doctor.
0:05:32 > 0:05:37When I looked at myself, I thought, "Is that really what it looks like?"
0:05:37 > 0:05:38And it's so...
0:05:39 > 0:05:44I really didn't like it. It was really scary.
0:05:45 > 0:05:49If I start laughing, if someone makes me laugh,
0:05:49 > 0:05:56I will lose control of my muscles and sometimes collapse on the floor,
0:05:56 > 0:05:59or just can't move and then I've got to sit and wait,
0:05:59 > 0:06:03for ten seconds or so until I've got my energy back
0:06:03 > 0:06:06and I can stand back up again.
0:06:08 > 0:06:11As well as taking tablets to keep him awake during the day,
0:06:11 > 0:06:15Harry also takes medicine to stop his collapsing attacks.
0:06:15 > 0:06:16But he does still get them,
0:06:16 > 0:06:21especially when he's messing about with his brother, Matthew.
0:06:21 > 0:06:23- All right? - What happened there, then?
0:06:25 > 0:06:26All right?
0:06:30 > 0:06:32OK?
0:06:32 > 0:06:34Put you down, then.
0:06:37 > 0:06:45My brother, he made me laugh, and it's basically, just like, suddenly,
0:06:45 > 0:06:48I lose control of all my muscles in my legs and my arms,
0:06:48 > 0:06:51and I flop over and my head goes down like that,
0:06:51 > 0:06:57but it's nothing serious, it's not like I'm really injured,
0:06:57 > 0:07:04it's just... But I can hurt myself sometimes when I'm doing it.
0:07:05 > 0:07:10If it gets really bad, I can't open my eyes at all or it's hard to breath.
0:07:11 > 0:07:16- But it is quite traumatic to see it, isn't it, Harry?- Yeah.
0:07:21 > 0:07:25When your muscles go all weak like this, but you are fully awake,
0:07:25 > 0:07:26it's called cataplexy.
0:07:28 > 0:07:31The attack can last several minutes or just a few seconds.
0:07:39 > 0:07:43Cataplexy is something that Luke knows all about.
0:07:43 > 0:07:48The cataplexy attacks would happen at any time or any day, normally,
0:07:48 > 0:07:50but the worst ones would happen when I laughed,
0:07:50 > 0:07:53so it would be brought on by strong emotions,
0:07:53 > 0:07:55which obviously cos I am quite a cheerful guy,
0:07:55 > 0:07:58a positive guy, would be laughing.
0:07:59 > 0:08:01The solution that I found was don't laugh.
0:08:03 > 0:08:06So for about a year, I didn't laugh at all,
0:08:06 > 0:08:09unless something was really, really funny.
0:08:09 > 0:08:13But now, Luke only gets very mild cataplexy
0:08:13 > 0:08:16and doesn't usually drop to the floor.
0:08:18 > 0:08:19Oh...
0:08:21 > 0:08:23I can't even move.
0:08:26 > 0:08:30- Go and sit down, mate. - It's not as bad now.
0:08:33 > 0:08:39I did have to change who I am, just to deal with something,
0:08:39 > 0:08:43but now, I can be myself again, which is pretty good.
0:08:45 > 0:08:47Well, more than pretty good!
0:08:50 > 0:08:54In Slough, ten-year-old Kailan also knows how embarrassing
0:08:54 > 0:08:57falling to the floor laughing can be.
0:08:57 > 0:09:01Like Luke, he was diagnosed with narcolepsy two years ago.
0:09:03 > 0:09:07Sometimes, I just dropped to the floor for no reason.
0:09:07 > 0:09:09I'd be wondering why that happened.
0:09:09 > 0:09:12Like, my legs would just drop to the floor,
0:09:12 > 0:09:16like they're feeling OK and then I'd just be paralysed.
0:09:19 > 0:09:24Last year, Kailan was like laughing a lot and a lot and a lot
0:09:24 > 0:09:25and falling down.
0:09:25 > 0:09:28He went like that on the table and his face went all red.
0:09:28 > 0:09:32And he starts crying and stuff, but he's crying because he's laughing.
0:09:34 > 0:09:37Children like Kailan, Luke and Harry
0:09:37 > 0:09:42have a much smaller amount of a certain chemical in their brain than other people.
0:09:42 > 0:09:45But no-one is sure what causes that to happen.
0:09:46 > 0:09:49Even at the sleep clinic in Oxford where Kailan is being treated,
0:09:49 > 0:09:53he has never met another child with narcolepsy.
0:09:53 > 0:09:55It's usually adults who have it.
0:09:55 > 0:09:59So, it's not long that I saw you last, isn't it?
0:09:59 > 0:10:01Just a few weeks ago. How have you been?
0:10:01 > 0:10:06- I dunno. My mum knows.- Last time, sleep was a big problem,
0:10:06 > 0:10:08sleep was very disturbed.
0:10:08 > 0:10:10Sleep is still pretty disturbed.
0:10:10 > 0:10:14'It is so scary. Because some of the symptoms are so difficult
0:10:14 > 0:10:16'for children to explain to parents.'
0:10:16 > 0:10:19If your sleep is disturbed, you're having nightmares,
0:10:19 > 0:10:23you don't immediately think of narcolepsy.
0:10:23 > 0:10:26Even the cataplexy, you don't have to fall to the ground.
0:10:26 > 0:10:30It may just be a wobbly feel and children may find this
0:10:30 > 0:10:34very difficult to explain, so it takes some time to be able
0:10:34 > 0:10:39to get through the full history, to make the clinical diagnosis.
0:10:39 > 0:10:41We've not really had the arms and the legs.
0:10:41 > 0:10:44Kailan, have you had that lately?
0:10:46 > 0:10:48Not in a very good mood today, are you, Kailan?
0:10:52 > 0:10:55Shut up. You're going to make me laugh!
0:10:55 > 0:10:59For Luke, it was hard to convince anyone that he had a problem.
0:10:59 > 0:11:01When we first went to the doctors and that,
0:11:01 > 0:11:05they just thought it was hormones and teenager...
0:11:05 > 0:11:08Just normal for a kid my age.
0:11:11 > 0:11:15When the doctor told me it might be narcolepsy,
0:11:15 > 0:11:19I burst into tears and my mum was like, "It's OK,"
0:11:19 > 0:11:23and I explained I wasn't crying because I was that sad,
0:11:23 > 0:11:26it was just relief that someone finally believed me.
0:11:27 > 0:11:30Even though Harry sleeps a lot during the day,
0:11:30 > 0:11:33he finds it difficult to get a good sleep at night.
0:11:36 > 0:11:40Tonight, he is very restless and is woken up by a bad dream.
0:11:40 > 0:11:42HE CRIES
0:11:44 > 0:11:48I had quite a lot of nightmares...
0:11:48 > 0:11:51I still do now, sometimes.
0:11:51 > 0:11:56I wake up screaming, or, like yesterday, I was crying,
0:11:56 > 0:12:00because there was something emotional that happened in my dream.
0:12:00 > 0:12:06Luke also knows how terrifying the nightmares that come with narcolepsy can be.
0:12:06 > 0:12:11It made me feel quite insecure.
0:12:11 > 0:12:13I used to associate stuff with ghosts and that
0:12:13 > 0:12:17and dad would be like, "There's no such thing as ghosts,"
0:12:17 > 0:12:21but I'd think, "So why's it only happening to me?"
0:12:21 > 0:12:23Cos I thought it was real. I'd be like,
0:12:23 > 0:12:25"Why is no-one else seeing this?"
0:12:28 > 0:12:30You ready for your tablets?
0:12:30 > 0:12:32Come on, it's bedtime.
0:12:32 > 0:12:38- I'm just going to defeat one more person.- No, Kailan. No, no.
0:12:38 > 0:12:41Kailan takes a tablet at night to help him sleep.
0:12:41 > 0:12:46- Sit up for your tablet, please. - Don't want my stupid tablet, Mum.
0:12:46 > 0:12:49- Cos you're getting tired. - No, cos I hate you.
0:12:50 > 0:12:55Then in the morning, all the boys take tablets to keep them awake.
0:12:56 > 0:12:57Cheers.
0:12:57 > 0:13:01All right. You've got about ten minutes, yeah?
0:13:01 > 0:13:03Tablets in hand.
0:13:09 > 0:13:12HE MUMBLES SLEEPILY
0:13:12 > 0:13:13Hmm?
0:13:14 > 0:13:16I put it on my lip
0:13:16 > 0:13:18and then, when I'm ready...
0:13:23 > 0:13:25..I flip it in and then swallow it.
0:13:25 > 0:13:30But the effects of the tablets do wear off as the day goes by.
0:13:30 > 0:13:32And that's when moods can change.
0:13:32 > 0:13:35One minute, Harry's playing with his brother, Matthew.
0:13:35 > 0:13:39The next, he's tired and grumpy.
0:13:39 > 0:13:41He ruins everything that I have to do.
0:13:43 > 0:13:47He's only trying to make you laugh so you can't play with him, isn't he?
0:13:47 > 0:13:50- Yeah, exactly.- Oh, come on.
0:13:50 > 0:13:54We're going inside. Come on.
0:13:54 > 0:13:58When he's playing football, if he's around in the midfield,
0:13:58 > 0:14:03then he'll probably just fall over if someone makes him laugh.
0:14:03 > 0:14:11I can't, cos he's always doing stuff to make my problem worse.
0:14:13 > 0:14:15- Does somebody hold him up when he laughs?- No.
0:14:15 > 0:14:19You hold him up though, don't you, when he laughs sometimes?
0:14:19 > 0:14:21It's a lot of pressure for Matthew.
0:14:21 > 0:14:23He worries about him all the time.
0:14:23 > 0:14:27You can see it's obviously affecting how he feels.
0:14:28 > 0:14:30You do love him really, don't you?
0:14:30 > 0:14:32It's nice that you care about him.
0:14:34 > 0:14:36Eh? Eh?
0:14:39 > 0:14:43- You do care about him, don't you?- Yeah.
0:14:48 > 0:14:50You're a good brother to him, really, aren't you?
0:14:50 > 0:14:54Cos you're always looking out for him, aren't you?
0:14:54 > 0:14:56- Can I go and get a drink? - Of course you can, darling.
0:15:01 > 0:15:04The tablets the boys take do help to control their narcolepsy.
0:15:04 > 0:15:09But like all medicine, they can sometimes cause other problems.
0:15:09 > 0:15:11These are known as side effects.
0:15:11 > 0:15:14At night time, I get really hungry.
0:15:15 > 0:15:20I don't know why. My mum says it's possibly because of the medicine.
0:15:20 > 0:15:25And I get up, maybe get a pancake...
0:15:25 > 0:15:30crisps, or ask for noodles, things like that.
0:15:30 > 0:15:35Noodles at this time of night would be really crazy.
0:15:36 > 0:15:40I keep getting up and sometimes my sister or Mum
0:15:40 > 0:15:43can't get to sleep, cos they keep hearing me walking about.
0:15:44 > 0:15:46It's the middle of the night
0:15:46 > 0:15:49and Kailan has been asleep for two hours.
0:15:49 > 0:15:53He had a snack before he went to bed, but he's already hungry.
0:15:53 > 0:15:58It's five past 12 and the munchy man is hungry.
0:15:58 > 0:16:00He likes his munchies at night.
0:16:00 > 0:16:04It is his first time, but hopefully, it'll be the last for the night as well.
0:16:05 > 0:16:07He has to make his belly feel full.
0:16:07 > 0:16:10When Kailan goes looking for food in the night,
0:16:10 > 0:16:12his mum always gets up too.
0:16:13 > 0:16:16Come on, then. You eat up before you go to bed.
0:16:16 > 0:16:19She doesn't like him to eat his food on his own,
0:16:19 > 0:16:21in case he falls asleep and chokes.
0:16:21 > 0:16:24- Back to sleep.- Kailan, go to sleep.
0:16:25 > 0:16:27Straight back to sleep.
0:16:30 > 0:16:32What if there was a break?
0:16:32 > 0:16:36- OK, night-night.- Night, Mum.
0:16:38 > 0:16:41Mum, Mum-Mum. Mmmm.
0:16:43 > 0:16:46Three hours later, Kailan is hungry again.
0:16:46 > 0:16:51Even though he is exhausted, the urge to eat is overwhelming.
0:16:53 > 0:16:56It does affect me, but I don't notice it.
0:16:58 > 0:17:02To me, I don't notice anything. I just think I'm normal, because I can't tell.
0:17:02 > 0:17:03What's that face for?
0:17:07 > 0:17:10But getting up with Kailan up to four times a night
0:17:10 > 0:17:13really takes its toll on Kailan's mum.
0:17:15 > 0:17:16Harry, night-night.
0:17:18 > 0:17:21You try and sleep well tonight, OK?
0:17:21 > 0:17:25Like Kailan, Harry also used to get up in the night to eat.
0:17:25 > 0:17:28But his doctor told his parents to take drastic action
0:17:28 > 0:17:32to put a stop to Harry's night-time munchies.
0:17:32 > 0:17:36I can get hungry and if I can find anything, I will snack on it.
0:17:36 > 0:17:39You do get hungry at night, don't you?
0:17:39 > 0:17:42I still do a bit but not as much,
0:17:42 > 0:17:47because Mummy's locked up the kitchen,
0:17:47 > 0:17:49so if I try and get in, I can't.
0:17:49 > 0:17:52And she's locked the end door as well, so I can't get in that either.
0:17:52 > 0:17:56Initially, he was still trying to get in. In the middle of the night,
0:17:56 > 0:17:58we could hear him trying the door.
0:17:58 > 0:17:59But since then, he's got used to it.
0:17:59 > 0:18:04So he will very often still get up,
0:18:04 > 0:18:06but very often he'll just get back to sleep
0:18:06 > 0:18:08and carry on through the night.
0:18:10 > 0:18:13It's helping a lot. I get a better sleep at night,
0:18:13 > 0:18:18because when I'm awake, I'll be awake for 15 minutes,
0:18:18 > 0:18:20but I'd wake up about five times,
0:18:20 > 0:18:24so it'd be altogether about an hour I'd be awake.
0:18:25 > 0:18:29But now, if I wake up, I know I can't get in so I'll just...
0:18:29 > 0:18:34Cos I'm still a bit woozy where I've just woken up,
0:18:34 > 0:18:37I can just go straight back to sleep again.
0:18:37 > 0:18:40As a parent, you feel it's a really tough thing to have to do,
0:18:40 > 0:18:42locking your children out of the kitchen
0:18:42 > 0:18:44is quite an extreme thing to do,
0:18:44 > 0:18:47but in the circumstances, it's definitely for the best.
0:18:49 > 0:18:52After a night tossing and turning,
0:18:52 > 0:18:56getting up in the morning really is a struggle for Kailan.
0:18:56 > 0:18:58I'm trying to get Kailan up for school.
0:18:58 > 0:19:01He's had his breakfast, but fallen back to sleep,
0:19:01 > 0:19:04so I'm going to call him again.
0:19:04 > 0:19:06This is a regular routine.
0:19:10 > 0:19:13I shall eat mine and then go back in and call him again.
0:19:13 > 0:19:16Hopefully, we'll succeed.
0:19:17 > 0:19:19You need to get up for school, honey.
0:19:21 > 0:19:23- Stretching!- Don't shout.
0:19:24 > 0:19:27Sorry, Mummy. Stretching, Mummy.
0:19:27 > 0:19:31Angry cos when you wake me up, it makes me angry.
0:19:32 > 0:19:35Sometimes with me, even if my mum tells me to get up, I can't.
0:19:35 > 0:19:38I'm too tired to literally get up.
0:19:38 > 0:19:41And I'll have to stay in bed for a little bit more,
0:19:41 > 0:19:44to get energy to be able to get up.
0:19:50 > 0:19:52Come on. Don't get upset with me.
0:19:52 > 0:19:54HE MOANS
0:19:54 > 0:19:58I feel sorry for her, because I'm being nasty for no reason
0:19:58 > 0:19:59and I don't mean it.
0:19:59 > 0:20:04Sometimes I go tell her "I'm sorry, I don't mean it," and she says "OK."
0:20:05 > 0:20:09- You've got to let me sleep. - But it's half eight...
0:20:09 > 0:20:12you're supposed to be in school in a quarter of an hour.
0:20:12 > 0:20:15You haven't done your clothes, your face...
0:20:15 > 0:20:19- Cos you're in here.- OK. So, you're going to get dressed now? - When you go away.- OK.
0:20:21 > 0:20:25Eventually Kailan's mum gets him out of the house and in the car.
0:20:25 > 0:20:27But he's not awake for long.
0:20:34 > 0:20:37Harry has told all his friends about his narcolepsy
0:20:37 > 0:20:41and most children at his primary school know about it.
0:20:41 > 0:20:46It's nice, cos I've got a lot of support from Harvey
0:20:46 > 0:20:48and some of my other friends as well.
0:20:48 > 0:20:53So it's quite nice to have someone to...help.
0:20:53 > 0:20:56When he gets cataplexic,
0:20:56 > 0:21:01I sometimes think he's going to like suddenly fall over.
0:21:04 > 0:21:06And I get a little bit scared.
0:21:08 > 0:21:12Harry feels so relaxed about people knowing about his condition
0:21:12 > 0:21:14that after lunch, he is quite happy to go
0:21:14 > 0:21:16and have a lie down in the staff room.
0:21:16 > 0:21:18I had a really bad night last night.
0:21:20 > 0:21:22I had a really bad dream.
0:21:22 > 0:21:24Well, a lot of...
0:21:24 > 0:21:26My mum didn't have a good night either,
0:21:26 > 0:21:29cos I kept calling her down, because I had really bad dreams.
0:21:29 > 0:21:33So, hopefully I'll get to sleep today.
0:21:33 > 0:21:37So while the rest of Harry's class are reading,
0:21:37 > 0:21:40Harry has a little snooze.
0:21:40 > 0:21:43He does extra reading at home to make up for it.
0:21:49 > 0:21:51Things are a bit different for Luke.
0:21:51 > 0:21:55Until recently, he had only told one or two people.
0:21:55 > 0:21:58Very few children at his secondary school know.
0:21:58 > 0:22:02I don't have a problem with people thinking I'm different,
0:22:02 > 0:22:04because I am different, a lot different
0:22:04 > 0:22:12but it's...just the questions that I don't want to answer.
0:22:15 > 0:22:20Luke relies on his tablets and will power to keep himself alert at school,
0:22:20 > 0:22:24but by the last lesson, he's really struggling.
0:22:24 > 0:22:30- I've been on the first page for the past 15 minutes.- Do you just keep reading it over and over?- Yes.
0:22:30 > 0:22:31Do what you can.
0:22:31 > 0:22:36I try my hardest to get through the day at school and then,
0:22:36 > 0:22:42as soon as I get in the car to drive home,
0:22:42 > 0:22:45for that split second, I stop trying,
0:22:45 > 0:22:50I'll fall asleep, ten seconds, I'll be asleep.
0:22:50 > 0:22:53Tired and grumpy.
0:22:53 > 0:22:56- Dad, Ryan and Georgie's coming tonight.- Shut up.- Dad.
0:23:00 > 0:23:02As soon as I've had that sleep,
0:23:02 > 0:23:07I will still go in the house and have another sleep, for a good hour or two hours.
0:23:09 > 0:23:11Which is a daily basis.
0:23:11 > 0:23:15Usually he'll take his blazer off at least, but this time,
0:23:15 > 0:23:17he's just gone to the bedroom and gone to sleep.
0:23:17 > 0:23:21So... But yeah, it's normal.
0:23:21 > 0:23:24He can't think of anything when he's like that,
0:23:24 > 0:23:25he just has to go to sleep.
0:23:25 > 0:23:27He'll have his tea a bit later on, probably on his own,
0:23:27 > 0:23:30because everybody will have eaten by then.
0:23:30 > 0:23:35Harry, Kailan and Luke have had to learn to cope with narcolepsy on their own.
0:23:35 > 0:23:38It's been hard not knowing anyone else.
0:23:41 > 0:23:45But today, all that's going to change.
0:23:45 > 0:23:51I feel quite happy and excited about seeing the others.
0:23:53 > 0:23:55Hello, Harry. Give me a high five.
0:24:03 > 0:24:06- Look, it goes in height order.- Yeah!
0:24:06 > 0:24:11- Luke, when you get nightmares, do you ever wake up saying stuff?- Yeah.
0:24:11 > 0:24:15- Screaming and that?- Yeah. It's actually quite scary.- Mmm, very.
0:24:29 > 0:24:31- Sit here.- Let's go in size order.
0:24:34 > 0:24:38- This is what I'm on. - Is that your tablet?
0:24:39 > 0:24:43My tablets are the same size, but a different colour.
0:24:43 > 0:24:44Do you take two?
0:24:44 > 0:24:46I don't have that, I only have one for...
0:24:46 > 0:24:51To wake up... One to make me fall asleep and one to make me wake up.
0:24:51 > 0:24:58No, I have one in the morning, one at lunch and one in the evening, which is like a capsule.
0:24:58 > 0:25:02- It's kind of rubbery outside. - Yeah, yeah.
0:25:02 > 0:25:07- When I get cataplexy and I'm laughing, my eyes sort of go like that.- Yeah!- Yeah, they do.
0:25:08 > 0:25:12But when you just get narcolepsy, they say that your eyes are closing,
0:25:12 > 0:25:15but they're like going like that, but you don't recognise it,
0:25:15 > 0:25:19you think you can see everything perfectly and they say it's closing.
0:25:19 > 0:25:26- Yes, cos like, you get sick from sleeping.- I think it's boring - sleeping.- It is.
0:25:26 > 0:25:30When you were younger and you had narcolepsy and cataplexy,
0:25:30 > 0:25:33was there anything different about when you're older?
0:25:33 > 0:25:40- You get more used to it. - Yeah, it's easier to cope with. - Well...- In a way.- Yeah.
0:25:40 > 0:25:45I don't think I have narcolepsy, I don't feel any different.
0:25:45 > 0:25:48- See you, Harry.- See ya. - All right, see you.- See ya!
0:25:48 > 0:25:51Meeting the others has been quite helpful
0:25:51 > 0:25:56and nice, to know someone that has narcolepsy.
0:25:56 > 0:25:57It was very good.
0:25:58 > 0:26:03We shared our feelings, so when we were asleep, what dreams we get...
0:26:03 > 0:26:06When you suddenly wake up, what it's like.
0:26:06 > 0:26:11Yeah, we talked about cataplexy, narcolepsy, illusions,
0:26:11 > 0:26:15all sorts and it was fun. I liked it.
0:26:15 > 0:26:18Even though they are a bit younger than me,
0:26:18 > 0:26:22having that one thing in common has helped to kind of...
0:26:23 > 0:26:28Because you already know them, kind of thing... It's like you're already mates.
0:26:28 > 0:26:32Good to meet you. 'Hopefully they can keep in touch.
0:26:32 > 0:26:35'And as they grow up, they can help each other with their conditions'
0:26:35 > 0:26:39and give each other a bit of support, which will be really nice.
0:26:39 > 0:26:43I did feel like I was on my own at first,
0:26:43 > 0:26:49- but now I feel there's more people like me.- Been a pleasure meeting you.
0:26:53 > 0:26:56There is no cure for narcolepsy.
0:26:56 > 0:27:00But Luke, Kailan and Harry's new-found friendship will help them to cope.
0:27:00 > 0:27:03They've already had another day out together
0:27:03 > 0:27:05and are keeping in touch online.
0:27:05 > 0:27:08To be honest, I don't think about the future,
0:27:08 > 0:27:11what I do is, think about now and deal with it.
0:27:13 > 0:27:16One day at a time. That's what I'd say. One day at a time.
0:27:17 > 0:27:22When I'm older I might be able to cope with it better,
0:27:22 > 0:27:26because I will be...
0:27:26 > 0:27:30more evolved and more used to it.
0:27:31 > 0:27:34# Oh, my life
0:27:34 > 0:27:38# Is changing every day
0:27:38 > 0:27:41# In every possible way... #
0:27:41 > 0:27:44Subtitles by Red Bee Media Ltd
0:27:44 > 0:27:46E-mail subtitling@bbc.co.uk