0:00:04 > 0:00:10Once upon a time, there was a girl who slept and slept and slept.
0:00:10 > 0:00:14But this is not a fairy tale.
0:00:14 > 0:00:17'For 15-year-old Louisa Ball, it has been her confusing,
0:00:17 > 0:00:23'sometimes frightening reality for the past two years.'
0:00:23 > 0:00:27Louisa Ball has been diagnosed with a rare medical condition
0:00:27 > 0:00:32which recently caused her to hit the headlines worldwide.
0:00:32 > 0:00:34Louisa suffers from a very rare disorder
0:00:34 > 0:00:39which means she can drop off to sleep for up to two weeks at a time.
0:00:39 > 0:00:43The condition is called Kleine-Levin Syndrome
0:00:43 > 0:00:45and there is no known cure.
0:00:45 > 0:00:48There are similarities between this and some other sleep disorders,
0:00:48 > 0:00:52but this is very unusual in that people sleep for such long periods.
0:00:52 > 0:00:57Only an estimated one in a million people suffer from the disease.
0:00:57 > 0:00:59It's like I'm on drugs.
0:00:59 > 0:01:02I feel as though I lose my daughter for two weeks of every month.
0:01:02 > 0:01:07In the last two years, Louisa has slept through friends' birthdays,
0:01:07 > 0:01:11family holidays and weeks of school.
0:01:11 > 0:01:14I can't physically keep myself awake.
0:01:14 > 0:01:18It's almost like there's a devil pinning her to her bed.
0:01:18 > 0:01:21But now 16-year-old Louisa has to stay awake
0:01:21 > 0:01:23for the biggest months of her life.
0:01:23 > 0:01:25In the next two months I've obviously got
0:01:25 > 0:01:29my school prom,
0:01:29 > 0:01:31I leave school,
0:01:31 > 0:01:32I'm going on holiday.
0:01:34 > 0:01:37I've got a big dance festival.
0:01:37 > 0:01:40If I had to sleep through any of them
0:01:40 > 0:01:44then obviously I'd be really upset and gutted that I'm going to miss out.
0:01:44 > 0:01:49Most importantly, Louisa's got to stay awake through her GCSE exams.
0:01:49 > 0:01:55If I don't get the grades I achieve then I might not be able to get where I want to in life later on.
0:01:55 > 0:01:59At any point she could fall into the trance-like sleep episode
0:01:59 > 0:02:01her parents call the "mode".
0:02:01 > 0:02:04It couldn't have been a worse week, could it, looking at that?
0:02:04 > 0:02:08When in mode, Louisa sleeps for up to 22 hours a day.
0:02:08 > 0:02:12When she is awake, her behaviour is radically altered.
0:02:12 > 0:02:14It is such a change in her personality.
0:02:14 > 0:02:16It's almost like a split personality.
0:02:16 > 0:02:19There were a few times when she was having a stand-off with her mum
0:02:19 > 0:02:22that you'd worry about her grabbing a kitchen knife
0:02:22 > 0:02:25or doing something really... You know, worse than you'd ever imagine.
0:02:25 > 0:02:29But can Louisa's dad find a way to keep her awake
0:02:29 > 0:02:30for the biggest months of her life?
0:02:30 > 0:02:33There's nothing without reason.
0:02:33 > 0:02:36I've always been convinced that there's a cure out there.
0:02:51 > 0:02:53The Ball family from Sussex
0:02:53 > 0:02:56are nearing the end of a week's holiday in Spain.
0:02:56 > 0:02:59Loser in the sea, no pressure!
0:03:01 > 0:03:03Yeah, you've got to get the ball!
0:03:09 > 0:03:12But Louisa has slept through most of it.
0:03:15 > 0:03:19Lou, we're going to go off to the beach in a minute, babe.
0:03:19 > 0:03:22Babe? Do you want to join us at the beach?
0:03:24 > 0:03:25Huh?
0:03:25 > 0:03:27Lou?
0:03:33 > 0:03:37It's just a shame because it was supposed to be a family holiday,
0:03:37 > 0:03:41a little break at the end of Easter, just a nice little relaxation time
0:03:41 > 0:03:44before we go back to school and all the stress comes again.
0:03:44 > 0:03:47But, you know, she's got to deal with it, really.
0:03:47 > 0:03:50It's just a shame she's missing it all.
0:03:55 > 0:03:58Louisa's family take turns to look after her.
0:03:58 > 0:04:01The doctors have told them it's crucial to wake her at least once a day
0:04:01 > 0:04:05to feed her and get her to the bathroom.
0:04:05 > 0:04:07But it's not easy.
0:04:09 > 0:04:10Lou, do you like these?
0:04:10 > 0:04:13I'll go and get you a pair, if you want.
0:04:13 > 0:04:16They're the sort of thing you like, aren't they?
0:04:16 > 0:04:18Do you want to come and have a look?
0:04:21 > 0:04:23Can I just try this on?
0:04:23 > 0:04:25Because you will like them.
0:04:25 > 0:04:28You'll say, "Why didn't you buy me a pair?" No?
0:04:28 > 0:04:31Louisa's mum is an occupational therapist,
0:04:31 > 0:04:35but when the patient is your own daughter it's tough.
0:04:35 > 0:04:39I've tried before to literally force her to wake up
0:04:39 > 0:04:43and she just starts swearing and gets so agitated and aggressive
0:04:43 > 0:04:46and I just think that is so distressing for her.
0:04:47 > 0:04:49She's been down for a week now,
0:04:49 > 0:04:52so we may be halfway through an episode.
0:04:52 > 0:04:57Keep our fingers crossed that within a week she's back to normal.
0:04:57 > 0:04:59Back dancing and doing all the things she wants to do.
0:05:01 > 0:05:04And doing some revision as well.
0:05:12 > 0:05:16Back at home in Sussex, Louisa's out of her sleep episode.
0:05:18 > 0:05:19Today she's back at school.
0:05:19 > 0:05:23Hello, baby! I missed you so much! I've missed you, too!
0:05:26 > 0:05:28Louisa's GCSEs start in four weeks' time
0:05:28 > 0:05:32and she's been called in to see the headmaster.
0:05:32 > 0:05:34He's well aware of Louisa's condition.
0:05:36 > 0:05:38There was some head scratching at the beginning
0:05:38 > 0:05:39to try and figure out
0:05:39 > 0:05:43what was going on and what was the basis of the condition,
0:05:43 > 0:05:44but the breakthrough,
0:05:44 > 0:05:49to have the diagnosis was fantastic, I suppose more for Louisa herself
0:05:49 > 0:05:51knowing that she wasn't making it up.
0:05:52 > 0:05:55Come in.
0:05:55 > 0:05:57Hello, Louisa. Have a seat.
0:05:57 > 0:06:01We worked out you actually missed a quarter of your schooling in Year 11.
0:06:01 > 0:06:05What I really want to say, the general thing I will be saying is,
0:06:05 > 0:06:06it's not too late.
0:06:06 > 0:06:10If you just look after yourself, keep your head,
0:06:10 > 0:06:14you stand a good chance of getting, you know, a really reasonable set
0:06:14 > 0:06:16of GCSEs in the summer.
0:06:16 > 0:06:20I know in the past, because you have the periods of sleepfulness,
0:06:20 > 0:06:23that when you're awake you want to cram lots of stuff in.
0:06:23 > 0:06:27The big focus obviously for this period has got to be on the exams.
0:06:27 > 0:06:29Thanks very much, Louisa.
0:06:33 > 0:06:37It's a week since Louisa's last sleep episode in Spain
0:06:37 > 0:06:41and, as usual, she can remember little of it.
0:06:41 > 0:06:47For the first time, her family have decided to show her footage of what she's like in mode.
0:06:51 > 0:06:52I look scary!
0:06:52 > 0:06:55You do, yeah.
0:06:55 > 0:07:00When she's in an episode, Louisa sleeps for up to 22 hours a day.
0:07:00 > 0:07:01When she's woken,
0:07:01 > 0:07:06she displays typical symptoms of Kleine-Levin Syndrome, irritability,
0:07:06 > 0:07:10feeling in a dream-like state and binge eating.
0:07:10 > 0:07:12My eyes don't look blue.
0:07:12 > 0:07:14They look really dull.
0:07:14 > 0:07:18I think it's because your pupils are so big when you're in a mode,
0:07:18 > 0:07:20the whole of your pupil, the black...
0:07:20 > 0:07:22It's like I'm on drugs.
0:07:22 > 0:07:29It's just so baffling to think why would one person
0:07:29 > 0:07:34in so many millions be affected by it and what brings it on?
0:07:34 > 0:07:38You know, a normal life for 14 years and then, all of a sudden, bang,
0:07:38 > 0:07:41you've inherited this.
0:07:41 > 0:07:43I don't think it looks like me.
0:07:45 > 0:07:48We'll find out a bit more as time goes by.
0:07:51 > 0:07:53But Louisa doesn't have much time.
0:07:53 > 0:07:56She's got a major dance competition coming up,
0:07:56 > 0:07:59her school prom and her GCSEs.
0:08:01 > 0:08:03My French orals are on Wednesday.
0:08:03 > 0:08:05We'll speak French for the rest of the day, shall we?
0:08:05 > 0:08:08Bonjour.
0:08:08 > 0:08:09I know that
0:08:09 > 0:08:12my grades would have been so much better, like,
0:08:12 > 0:08:16if I didn't have this because, obviously, the amount of time I missed off school.
0:08:16 > 0:08:20But, obviously, there's nothing I can do about it.
0:08:20 > 0:08:21I'm just going to try my best.
0:08:21 > 0:08:25Obviously I don't know when I'm next going to go back to sleep,
0:08:25 > 0:08:28so I want to make the most of the time now. That's always what I look at
0:08:28 > 0:08:31and that's what makes me get up and do stuff.
0:08:34 > 0:08:38Tonight, Zoe, Louisa's best friend from dance,
0:08:38 > 0:08:41is picking her up for rehearsal.
0:08:41 > 0:08:44Zoe hasn't seen her since she went into mode 10 days ago.
0:08:44 > 0:08:4610 days.
0:08:46 > 0:08:4910 long old days.
0:08:51 > 0:08:53Hey!
0:09:11 > 0:09:16Louisa is a freestyle dance champion and in three weeks she is due
0:09:16 > 0:09:21to take part in the Freestyle World Qualifier in Oxford.
0:09:21 > 0:09:22And it's not just a hobby.
0:09:22 > 0:09:25Louisa is hoping to have a career in dance.
0:09:25 > 0:09:28Right, concentrate. Energy, technique, speed,
0:09:28 > 0:09:30power. All of it, yes?
0:09:42 > 0:09:46Unfortunately with Louisa she had a mode recently in Spain
0:09:46 > 0:09:50on their holiday, so obviously if you haven't moved your body at all
0:09:50 > 0:09:54for near to two weeks you will tighten up and it is harder,
0:09:54 > 0:09:57so obviously Louisa does have the downside that other dancers don't.
0:09:57 > 0:10:00For no fault of her own, suddenly she can't stretch, work out
0:10:00 > 0:10:03and use her body in the same way,
0:10:03 > 0:10:07so it makes it much more of a struggle for her.
0:10:09 > 0:10:12Louisa was a typical teenager
0:10:12 > 0:10:16until she developed Kleine-Levin Syndrome in October 2008.
0:10:19 > 0:10:23She'd been poorly with flu and we had a call from school
0:10:23 > 0:10:28and they said Louisa has fallen asleep and she's rambling and she's not making any sense.
0:10:28 > 0:10:33They were quite worried because they could see that it was a different person than they were used to.
0:10:34 > 0:10:37I remember sitting in an exam and I started feeling really tired
0:10:37 > 0:10:39and my teacher came up to me
0:10:39 > 0:10:41and was, like, "Louisa, are you OK?" I was, like, "No."
0:10:41 > 0:10:46She was telling me all this stuff about how she's moving away to Spain,
0:10:46 > 0:10:48just all this stuff that really wasn't true,
0:10:48 > 0:10:51but that's what she was believing.
0:10:52 > 0:10:54I took her straight to the GP
0:10:54 > 0:10:57because we didn't know what was happening to her.
0:10:57 > 0:10:59The GP went, "Whoa!"
0:10:59 > 0:11:03Well, I was, like, hallucinating or something.
0:11:03 > 0:11:06She was fidgeting and her facial expressions
0:11:06 > 0:11:10and then she was tired and it was a case of battling to keep her awake.
0:11:10 > 0:11:12After that I don't remember a thing.
0:11:12 > 0:11:14Just all of a sudden I went blank.
0:11:16 > 0:11:19I just slept and that was it,
0:11:19 > 0:11:22that was the first time that I went into a sleep episode
0:11:22 > 0:11:24for, like, 10 days.
0:11:25 > 0:11:28Then I woke up and I was fine again!
0:11:30 > 0:11:35But four weeks later, Louisa suffered another sleep attack.
0:11:35 > 0:11:38So it was then that we started the quest of going through
0:11:38 > 0:11:44all the doctors and the tests and the brain scan, MRI scan.
0:11:44 > 0:11:46The family still clung to the hope
0:11:46 > 0:11:50that Louisa's condition was temporary, but after several months
0:11:50 > 0:11:56and many visits to specialists, they finally got a diagnosis.
0:11:56 > 0:12:00They were told that Louisa had an incredibly rare sleep disorder
0:12:00 > 0:12:04called Kleine-Levin Syndrome and that no-one knew what caused it.
0:12:06 > 0:12:09When we first got the diagnosis it was sort of
0:12:09 > 0:12:11a champagne and hangover moment.
0:12:11 > 0:12:14Initially you got this great diagnosis and then she said,
0:12:14 > 0:12:18"Unfortunately there isn't really a cure, but I've printed some information off for you,
0:12:18 > 0:12:20"so take that away and read it."
0:12:23 > 0:12:26The first stages of Louisa with the illness, I used to sit with her
0:12:26 > 0:12:29for hours just stroking her head thinking, "Please, come on,
0:12:29 > 0:12:31"I want you back."
0:12:34 > 0:12:38She cried one night with me, "Mummy, why me? It's not fair.
0:12:38 > 0:12:39"I don't want to have this."
0:12:39 > 0:12:44And I just said, "Lou, at the end of the day you're special."
0:12:44 > 0:12:46That's how I explained it, she was special.
0:12:52 > 0:12:55It's been two weeks since Louisa's last episode
0:12:55 > 0:13:00and she's deciding on her outfit for her dance competition.
0:13:00 > 0:13:03My last costume was £800 and it literally had, like,
0:13:03 > 0:13:06probably, a third of what stones are on there.
0:13:07 > 0:13:09These are my eyelashes.
0:13:09 > 0:13:10Oh, you like them.
0:13:10 > 0:13:12They're really long.
0:13:12 > 0:13:15Are you trying this costume on? Can you go and put it on?
0:13:18 > 0:13:20Since Louisa developed Kleine-Levin Syndrome,
0:13:20 > 0:13:24she's already slept through three big dance competitions.
0:13:24 > 0:13:27She doesn't want to miss this one.
0:13:27 > 0:13:30It's, like, one of the biggest festivals that they do
0:13:30 > 0:13:34and obviously if I miss it then I am going to be really gutted.
0:13:34 > 0:13:37Kleine-Levin sufferers
0:13:37 > 0:13:40can go for weeks or even months without an episode.
0:13:40 > 0:13:44Louisa's sleep episodes had been occurring every four weeks,
0:13:44 > 0:13:49but for the first time ever, there has been an eight-week gap,
0:13:49 > 0:13:54so she could now be awake for the dance competition, the school prom and her GCSEs.
0:13:54 > 0:13:56I've just blocked out the last period
0:13:56 > 0:14:01that she was asleep for, which ended on 29th April
0:14:01 > 0:14:04and it's a question mark as to when the next one might be.
0:14:08 > 0:14:11The family believe the eight-week gap could be due to a new drug
0:14:11 > 0:14:15Louisa has been trying, the thyroid drug Cytomel.
0:14:17 > 0:14:21Rick first heard about the drug from other Kleine-Levin sufferers in America
0:14:21 > 0:14:23who claimed it had shortened their sleep episodes,
0:14:23 > 0:14:26but it's not yet licensed in the UK.
0:14:26 > 0:14:30I think with something as unusual as this, you've got to be prepared
0:14:30 > 0:14:33to look outside the box and say, is there something else
0:14:33 > 0:14:35that we're missing or we're not doing?
0:14:35 > 0:14:40And whilst it might not be accepted, or run of the mill,
0:14:40 > 0:14:43who's to say that it's not going to be ultimately
0:14:43 > 0:14:45the cure you're looking for?
0:14:46 > 0:14:49Today the family are going to see Louisa's consultant
0:14:49 > 0:14:52at St George's Hospital in London.
0:14:52 > 0:14:55She diagnosed Louisa two years ago and agreed to let her take
0:14:55 > 0:15:00the thyroid drug under close supervision.
0:15:00 > 0:15:01I think it's just a routine check-up
0:15:01 > 0:15:08and, obviously, hopefully, she'll have a prescription for the Cytomel tablets.
0:15:08 > 0:15:10Recently, Rick's heard from other sufferers
0:15:10 > 0:15:14that the thyroid drug may not just shorten the length of an episode,
0:15:14 > 0:15:16it might also delay the onset.
0:15:16 > 0:15:18They're planning to discuss this with the consultant.
0:15:18 > 0:15:22Louisa thinks if I give them to her this weekend coming,
0:15:22 > 0:15:27because it's four weeks since she's had an episode,
0:15:27 > 0:15:33she's hoping that it will make her last another four weeks, but I'm not sure.
0:15:33 > 0:15:39I've got a competition this weekend so I want to start taking them because I don't want to miss it.
0:15:39 > 0:15:42And, plus, I've got all my exams, as well.
0:15:42 > 0:15:46We were told not to give them to her, only if we saw an episode,
0:15:46 > 0:15:49so if they say no harm in trying,
0:15:49 > 0:15:56we'll go for it just to help Louisa, really, and get her through eight weeks of being awake.
0:16:30 > 0:16:33It's been a frustrating visit.
0:16:33 > 0:16:36The consultant has given Louisa more of the thyroid drug,
0:16:36 > 0:16:40but she can't confirm it will delay a sleep episode.
0:16:40 > 0:16:45She just said take it as and when I have been taking it.
0:16:45 > 0:16:49She said you need hundreds of patients to be on Cytomel to build up
0:16:49 > 0:16:55enough information for it to go into a journal and be published.
0:16:55 > 0:16:58The family still don't know if Louisa's eight week gap
0:16:58 > 0:17:00was due to the thyroid drug.
0:17:00 > 0:17:04Would it not be worth starting it now?
0:17:04 > 0:17:08Yes, Dad. I'm agreeing with Dad, not you. Yes.
0:17:08 > 0:17:12So, whatever, you know, it's a gamble, it is.
0:17:12 > 0:17:17We can do it, but then it could be just a coincidence that Louisa's got the eight week gap
0:17:17 > 0:17:22or it could be the drug. We still don't know, do we?
0:17:31 > 0:17:35At home, Mum is re-reading about Cytomel.
0:17:35 > 0:17:39It's the most potent form of thyroid hormone.
0:17:39 > 0:17:44It acts on the body to increase the metabolic rate.
0:17:44 > 0:17:49If someone told me three years ago I'd be giving my daughter
0:17:49 > 0:17:54a drug that was not licensed in this country
0:17:54 > 0:17:58and we don't really know a lot about,
0:17:58 > 0:18:00I would say no way, Jose!
0:18:00 > 0:18:04But when you live with your daughter, like...
0:18:04 > 0:18:07you'd do anything to try and help her
0:18:07 > 0:18:12and stop what she's going through.
0:18:13 > 0:18:20It's the weekend of the dance competition and four weeks since Louisa's last episode.
0:18:28 > 0:18:31She and her family have made a decision.
0:18:31 > 0:18:35As her consultant is happy she's not suffering any ill effects from the thyroid drug,
0:18:35 > 0:18:42she's going to take it early in the hope that it could stop a sleep episode coming on.
0:18:42 > 0:18:43How long's it take to get there?
0:18:43 > 0:18:47Mum's driving? No, it should be about two and a half hours, three? Yeah?
0:18:47 > 0:18:49Yeah.
0:18:52 > 0:18:56After weeks of preparation, Louisa and her dance friends
0:18:56 > 0:19:00arrive at the Freestyle World Qualifier in Oxfordshire.
0:19:05 > 0:19:09With over 200 dancers, competition will be tough
0:19:09 > 0:19:14and there's no guarantee Louisa will even make it through the first round.
0:19:17 > 0:19:20She's just admitted she's really nervous,
0:19:20 > 0:19:23more nervous than she normally is.
0:19:23 > 0:19:26The worst thing that could happen is that I don't get a recall.
0:19:36 > 0:19:39MUSIC STARTS
0:19:41 > 0:19:43Go on, babe!
0:19:53 > 0:19:56Some judges like different things, don't they?
0:19:56 > 0:19:57It's, like, technique, faces.
0:19:57 > 0:20:00Pointy toes.
0:20:00 > 0:20:03Fast things. Runs, flexibility.
0:20:03 > 0:20:08- My mum says, "PSS - Power, Speed and Smile!"- Is that what your mum says?
0:20:08 > 0:20:13Yeah. And she says, "If you don't get a trophy you're walking home, so there's some incentive for you!"
0:20:17 > 0:20:18I'm nervous.
0:20:21 > 0:20:26Louisa gets the recall she wants into the final.
0:20:29 > 0:20:31Go, Louisa!
0:20:33 > 0:20:35MUSIC STARTS
0:20:55 > 0:20:57MUSIC FADES
0:21:01 > 0:21:05- How did that feel?- It was all right. - You were really fast.
0:21:05 > 0:21:08- I won't win.- You don't know.
0:21:08 > 0:21:09I doubt it.
0:21:11 > 0:21:14Over 16.
0:21:14 > 0:21:16Into fifth place, 22.
0:21:18 > 0:21:22Well done. Fourth, 153.
0:21:24 > 0:21:26Third, 84.
0:21:28 > 0:21:30Give them a cheer! Second, 149.
0:21:34 > 0:21:38Louisa takes first place.
0:21:42 > 0:21:47I'm really proud of her. And I think it's really good for her confidence.
0:21:47 > 0:21:53Sleeping for half her life, it's quite hard to get your confidence back up and get back out there.
0:21:58 > 0:22:06It's a big day for Louisa - the official last day of school before GCSEs start.
0:22:06 > 0:22:10It doesn't feel real, doesn't feel as if we're actually leaving.
0:22:10 > 0:22:11Yeah, it feels like a dream.
0:22:11 > 0:22:15I think it's going to feel really weird going to college,
0:22:15 > 0:22:18it's going to be so much different, so much more independent.
0:22:20 > 0:22:27The next time her year group will all be together again is the end of school prom in a month's time.
0:22:27 > 0:22:29That's my dress.
0:22:29 > 0:22:31I don't want Louisa to miss any of the prom.
0:22:31 > 0:22:33We're all looking forward to it.
0:22:33 > 0:22:36And not to have her there would make it a shame for everyone.
0:22:36 > 0:22:42- It would be like someone's missing. It would be horrible.- It wouldn't be the same.
0:22:42 > 0:22:45I'd do anything to keep her awake for that night.
0:22:45 > 0:22:48Sellotape her eyes open!
0:22:50 > 0:22:55Louisa's been looking forward to her school prom for months.
0:22:55 > 0:22:59Choosing the perfect dress is crucial, so Lottie's taking her shopping.
0:23:04 > 0:23:06I like this colour.
0:23:06 > 0:23:08It's a beautiful colour, the turquoise.
0:23:08 > 0:23:14- She's beautiful. I'm her mum - I'm allowed to say that, aren't I?- Yes.
0:23:14 > 0:23:18We had to come today to grab the moment while she's awake.
0:23:18 > 0:23:22Because she could go to sleep in a couple of weeks' time.
0:23:22 > 0:23:25We just don't know.
0:23:25 > 0:23:27Louisa spots the dress she loves.
0:23:27 > 0:23:29It's right up there.
0:23:29 > 0:23:32The wedding dress!
0:23:32 > 0:23:36The ruched one, 1950s-style? I know, it's a great dress.
0:23:36 > 0:23:38Your daughter's got expensive taste.
0:23:38 > 0:23:43Yes, I do know my daughter's got expensive taste.
0:23:43 > 0:23:47I didn't think I'd be standing here putting a wedding dress on you, Lou.
0:23:47 > 0:23:50Do you like the back?
0:23:50 > 0:23:53Yeah.
0:23:54 > 0:23:55Yeah, I like that.
0:23:57 > 0:24:01Yeah, I think it's got to be that one.
0:24:01 > 0:24:03Louisa and her mum are sold.
0:24:03 > 0:24:05Now they just have to convince Dad.
0:24:05 > 0:24:11The price she quoted was around about the £500 mark.
0:24:11 > 0:24:16Dad's just fallen over...
0:24:16 > 0:24:20and needs a stiff drink, and it's not even half past six.
0:24:20 > 0:24:23We want a guarantee you're not going to fall asleep.
0:24:23 > 0:24:26That's what I said. It's worth every penny if she's awake for it.
0:24:26 > 0:24:30It's not going to be worth a penny if she's asleep.
0:24:30 > 0:24:34We just have to win the Lottery or rob a bank now. What do you reckon?
0:24:34 > 0:24:35One or the other.
0:24:41 > 0:24:48It's now been five weeks since Louisa's last sleep episode, and she's started her exams.
0:24:48 > 0:24:55- Right, have a good day. And good luck, Lou. Let us know how you get on. Ciao, ciao.- Bye.
0:24:56 > 0:25:00She's sat the first part of chemistry, physics and biology
0:25:00 > 0:25:03and is squeezing in extra tuition in French.
0:25:03 > 0:25:07She needs five passes to get into college to study sport and dance.
0:25:07 > 0:25:11With all the time she's missed, she needs the extra help.
0:25:11 > 0:25:14She's capable, that's the thing.
0:25:14 > 0:25:18She can do it, and I'm just making sure now that she gets the grade
0:25:18 > 0:25:21that she deserves. I feel she's on track.
0:25:27 > 0:25:30During the weekend, Louisa is sleeping more and more.
0:25:30 > 0:25:33You going to get up do some revision?
0:25:33 > 0:25:35In a bit.
0:25:35 > 0:25:37In a bit? Yeah? OK, then.
0:25:37 > 0:25:43Unlike sufferers of narcolepsy, Kleine-Levin sufferers don't suddenly fall asleep.
0:25:43 > 0:25:45Their episodes come on gradually.
0:25:47 > 0:25:53Every day that she takes longer to wake up, that's just a normal typical teenage thing.
0:25:53 > 0:25:56When they're on school holidays, they like a lie-in.
0:25:56 > 0:25:59She's always usually up by lunchtime,
0:25:59 > 0:26:02Even if she's had a late night with her friends.
0:26:02 > 0:26:04If it goes past lunchtime, I always think,
0:26:04 > 0:26:06"Oh, no, is she going into mode?"
0:26:14 > 0:26:16Hi, babe.
0:26:16 > 0:26:18Lou?
0:26:18 > 0:26:20Lou, hon?
0:26:20 > 0:26:22I've started Zoe's hair.
0:26:24 > 0:26:25Do you want to finish it?
0:26:27 > 0:26:28Yeah?
0:26:30 > 0:26:33I'm going to open this a bit, Lou,
0:26:33 > 0:26:35let some air in, cos it's still daylight.
0:26:35 > 0:26:38I know you've been in bed all day, but...
0:26:38 > 0:26:40TELEVISION BLARES
0:26:42 > 0:26:45Can we turn it down now? Lou's got up to do your hair.
0:26:45 > 0:26:47Hi!
0:26:50 > 0:26:52Turn it down, Ross.
0:26:59 > 0:27:02It's as if I need to take something to liven me up.
0:27:04 > 0:27:07- Like what?- A Red Bull.
0:27:07 > 0:27:09Can I have one and see how I am?
0:27:09 > 0:27:12Cos at the moment, I'm awake and I feel all right,
0:27:12 > 0:27:14I just don't feel like I'm 100% here.
0:27:14 > 0:27:15You don't feel here?
0:27:18 > 0:27:20Louisa takes a dose of the thyroid drug,
0:27:20 > 0:27:24hoping it will stave off an episode.
0:27:28 > 0:27:31You all right? You going to go to bed?
0:27:31 > 0:27:33Yeah.
0:27:33 > 0:27:36Just like how she's so snappy.
0:27:36 > 0:27:39It upsets all of us really. But what's even worse is the fact,
0:27:39 > 0:27:43what's going to happen? Is she not going to be able to do her GCSEs?
0:27:43 > 0:27:46Is she going to have to do them and then muck them up?
0:27:46 > 0:27:48It's just quite hard.
0:27:50 > 0:27:55Louisa sets her alarm for 7am the next day.
0:27:55 > 0:27:58Do you reckon you can just will yourself to stay awake?
0:27:58 > 0:28:01I'll try my very hardest, I'll tell you that.
0:28:01 > 0:28:02'We can usually tell signs.
0:28:02 > 0:28:06'I don't usually look out for them because I try to avoid them.'
0:28:06 > 0:28:10I hope this Cytomel works, whatever it is, because she misses out on things.
0:28:10 > 0:28:12There's things planned.
0:28:12 > 0:28:15We've just got to hope she doesn't go in.
0:28:15 > 0:28:19I've got two of my most important exams next week
0:28:19 > 0:28:21and I really don't want to miss them.
0:28:21 > 0:28:23Hopefully I'll stay awake.
0:28:28 > 0:28:31It's the day before Louisa's maths exam.
0:28:34 > 0:28:36ALARM CLOCK BLEEPS
0:28:41 > 0:28:44ALARM CLOCK CONTINUES TO BLEEP
0:28:46 > 0:28:50Despite taking the thyroid drug early, Louisa has only made it
0:28:50 > 0:28:53five-and-a-half weeks, and is now fully in sleep mode.
0:28:56 > 0:28:57All right, Lou?
0:29:01 > 0:29:05It couldn't have been a worse week, could it, looking at that?
0:29:10 > 0:29:14Maths, English, French, English and Maths this week.
0:29:14 > 0:29:18She's not normally going to be right for next week,
0:29:18 > 0:29:20I wouldn't have thought.
0:29:20 > 0:29:23Rick gets straight on to the school to see if there's a way
0:29:23 > 0:29:25to stop Louisa failing her exams.
0:29:25 > 0:29:28Pat, hi, it's Rick Ball, Louisa's dad.
0:29:28 > 0:29:31Unfortunately, Louisa's gone into sleep mode again,
0:29:31 > 0:29:33and she's got her maths GCSE.
0:29:33 > 0:29:35OK. Seems a bit unfair, doesn't it?
0:29:35 > 0:29:40You'd have thought there'd be something in place where she could take an alternative exam.
0:29:40 > 0:29:44We'll have to take each day as it comes, and each subject as it comes.
0:29:44 > 0:29:47OK. Thanks very much.
0:29:47 > 0:29:48Bye.
0:29:52 > 0:29:57That wasn't particularly good news. What they're saying is...
0:29:59 > 0:30:03..as the course work isn't 40%, they can't give her a grade.
0:30:03 > 0:30:06And she can't resit the exam because it's not secure.
0:30:06 > 0:30:09So it's all pretty unhelpful in terms of, you think,
0:30:09 > 0:30:12"What has she being doing for the last three years?"
0:30:12 > 0:30:14She won't get a maths grade.
0:30:20 > 0:30:23She knows she needs five grade-C passes or above
0:30:23 > 0:30:25to get accepted into the college.
0:30:25 > 0:30:27For a start, the maths today
0:30:27 > 0:30:30looks like it's going to be a no-no if they can't give her a grade.
0:30:30 > 0:30:35I always was led to believe there would be some form of alternative,
0:30:35 > 0:30:37whether or not it was sitting another paper.
0:30:37 > 0:30:42But all a bit unchartered territory for us at the moment.
0:30:48 > 0:30:51However hard it is, I would love Lou
0:30:51 > 0:30:55to get up tomorrow morning, go into school and do her exams.
0:30:55 > 0:30:58Physically, I could not dress her, you couldn't get her up.
0:30:58 > 0:31:05I don't know, some people may think she's faking it, but I can assure you she's definitely not.
0:31:05 > 0:31:08It's almost like there's a devil pinning her to her bed.
0:31:11 > 0:31:16As Louisa sleeps through day after day of exams, life continues to pass by without her.
0:31:21 > 0:31:25Today was her English GCSE. Yesterday obviously was maths.
0:31:25 > 0:31:27that's two important ones down.
0:31:27 > 0:31:32But we're waiting to hear from school to see what they're going to do about discussing it with the exam boards.
0:31:35 > 0:31:38I hope they do accept her.
0:31:38 > 0:31:40She's tried so hard.
0:31:40 > 0:31:43They should. After everything she's gone through,
0:31:43 > 0:31:45it's such a shame it comes NOW.
0:31:48 > 0:31:54It's a nice day and I've opened the curtains and opened her window, and she's still fast asleep.
0:31:57 > 0:31:59She's well into her mode now,
0:31:59 > 0:32:02it's really intense, and it's a real deep sleep.
0:32:06 > 0:32:10During a sleep episode, Louisa's family never leave her on her own.
0:32:10 > 0:32:14They have to try to wake her at least once a day to eat and drink,
0:32:14 > 0:32:15and go to the bathroom.
0:32:15 > 0:32:19I feel physically sick having to wake her.
0:32:19 > 0:32:21But it's hard work.
0:32:21 > 0:32:23Lou, darling.
0:32:23 > 0:32:26Babe. Lou.
0:32:26 > 0:32:27- Lou.- What?
0:32:27 > 0:32:29Do you want to have something to eat?
0:32:29 > 0:32:32Yeah.
0:32:32 > 0:32:34- SHE SIGHS - Dear me.
0:32:36 > 0:32:39Come on, Lou. Lou.
0:32:42 > 0:32:43Lou!
0:32:43 > 0:32:45Yes, all right. I'm getting sick of your voice.
0:32:45 > 0:32:48Yeah, so am I, having to ask you, so let's move, yeah?
0:32:52 > 0:32:58The way she is when she's in this mode is very rude and obnoxious.
0:33:01 > 0:33:06After 15 hours in bed, Lottie finally manages to wake Louisa for food.
0:33:08 > 0:33:09Sit.
0:33:11 > 0:33:12Yeah?
0:33:12 > 0:33:16- I need a drink.- What do you want to drink? I've just taken you up one.
0:33:16 > 0:33:19What do you want? Do you want lemonade or something?
0:33:19 > 0:33:20Huh?
0:33:24 > 0:33:27She just looks so skinny.
0:33:27 > 0:33:29I always notice when she gets up
0:33:29 > 0:33:33and puts clothes on, cos she's in her pyjamas normally.
0:33:36 > 0:33:39Do you know how many days you've been asleep now?
0:33:39 > 0:33:41Um. What's today?
0:33:43 > 0:33:45Isn't it like Thursday today?
0:33:49 > 0:33:51Five days, or six days?
0:33:51 > 0:33:53It's Wednesday today.
0:33:57 > 0:33:59DOOR BELL RINGS
0:33:59 > 0:34:00Hello!
0:34:00 > 0:34:02ALL: Hi!
0:34:02 > 0:34:03You all right, girls?
0:34:03 > 0:34:05Seven days and five exams have passed.
0:34:05 > 0:34:09And Louisa's friends want to let her know that they're thinking about her.
0:34:09 > 0:34:14Lou, honey bun, you've got some visitors.
0:34:14 > 0:34:16Do you want to see them?
0:34:16 > 0:34:19It's Ellie. Ellie and Lucy.
0:34:19 > 0:34:21No.
0:34:21 > 0:34:22No?
0:34:25 > 0:34:27They've just come round.
0:34:27 > 0:34:29OK, darling, I'll tell them.
0:34:29 > 0:34:33They just came round to see how you were after their exam.
0:34:33 > 0:34:36Sorry, girls, no, she says it's nice of you to come around
0:34:36 > 0:34:38"but I don't want to see them"!
0:34:38 > 0:34:39ALL: Awww!
0:34:39 > 0:34:42We hope she feels better.
0:34:48 > 0:34:53Later, Louisa's mum manages to get her up for an hour to eat.
0:34:53 > 0:34:56Do you know who came round to see you today?
0:34:56 > 0:34:58Who?
0:34:58 > 0:35:03Ellie and... Is it Lucy, the dark-haired one?
0:35:03 > 0:35:06But Louisa has no recollection of her friends' visit.
0:35:06 > 0:35:08Yeah, they came round to see you.
0:35:08 > 0:35:12I asked if they could come in but you said no.
0:35:12 > 0:35:14Do you not remember?
0:35:14 > 0:35:18They came round after their last exam this week.
0:35:18 > 0:35:20Ellie said she's failed.
0:35:24 > 0:35:26'She's very cold and distant.'
0:35:26 > 0:35:29It's the yes-no answers, really.
0:35:41 > 0:35:45I try not to think about the future really,
0:35:45 > 0:35:48but it is there at the back of your mind.
0:35:48 > 0:35:53How is she going to manage her adult life when she is in episode?
0:35:53 > 0:35:56Who's going to look after her kids?
0:36:04 > 0:36:08Out of the blue, Lottie gets a surprising phone call.
0:36:08 > 0:36:11Does he communicate when he's awake?
0:36:11 > 0:36:13Or is he quite trance-like?
0:36:13 > 0:36:18Louisa is not the only Kleine-Levin sufferer in the UK.
0:36:18 > 0:36:21The mother of an 18-year-old boy called Ashley
0:36:21 > 0:36:24has found Lottie's details through the KLS support group.
0:36:24 > 0:36:27Ashley lives in Cambridge and has also been diagnosed
0:36:27 > 0:36:28with the condition.
0:36:28 > 0:36:32They don't believe you, do they? Do you think they don't believe you?
0:36:32 > 0:36:35They always say, "They can't possibly sleep that long."
0:36:35 > 0:36:39That's fine. Nice to speak to you, you're not alone now.
0:36:39 > 0:36:43Lottie and Ashley's mum arrange for the two families to meet up.
0:36:43 > 0:36:45Take care, bye.
0:36:45 > 0:36:49Yeah, it's quite nice to talk to somebody.
0:36:49 > 0:36:52It's nice to know that we are not the only people now.
0:36:52 > 0:36:57It's nice for Louisa as well, because she won't feel so isolated and alone.
0:36:58 > 0:37:01# Up on Melancholy Hill
0:37:01 > 0:37:05# There's a plastic tree... #
0:37:05 > 0:37:08I like those, but they're not high enough.
0:37:08 > 0:37:16Poor Lou. All her friends are getting excited, going prom-shoe shopping.
0:37:16 > 0:37:19My dress is sort of like that colour blue, but a lot darker.
0:37:19 > 0:37:23They're definitely high enough! Otherwise I'd fall over!
0:37:25 > 0:37:27The last two weeks of school
0:37:27 > 0:37:31is such a big step in her life that she's missed.
0:37:31 > 0:37:35She's not going to be able to look back on, "Oh, my God,
0:37:35 > 0:37:37"what we did on our last day!"
0:37:37 > 0:37:41Which is quite upsetting because you can't turn back the clock for that.
0:37:45 > 0:37:51It's been ten days and ten nights since Louisa entered sleep mode.
0:37:51 > 0:37:54Finally, she has woken of her own accord.
0:37:54 > 0:37:57But it will be a while before she's totally back to normal.
0:37:57 > 0:37:58Now, when you talk,
0:37:58 > 0:38:04your voice sounds more clear, whereas before it were more
0:38:04 > 0:38:08squeaky and that's why I was like, "Oh, shut your mouth!"
0:38:08 > 0:38:09- LOTTIE LAUGHS - Thanks(!)
0:38:09 > 0:38:13I need to go and scrub this fake tan off and have a bath
0:38:13 > 0:38:14and wash my hair.
0:38:20 > 0:38:23The other Kleine-Levin sufferer, Ashley, and his family,
0:38:23 > 0:38:26are travelling down from Cambridge to meet the Balls.
0:38:26 > 0:38:28# ..so quiet
0:38:28 > 0:38:31# You move so fast makes me feel lazy
0:38:31 > 0:38:33# Let's... #
0:38:33 > 0:38:36Don't know how to explain it. I suppose excited and nervous.
0:38:36 > 0:38:40I'm just a bit gutted that Lou's not herself.
0:38:40 > 0:38:45But hopefully she'll get through an hour or two with them.
0:38:45 > 0:38:49Louisa is in the transition phase of a sleep episode,
0:38:49 > 0:38:52but Ashley's family should know what that's like.
0:38:52 > 0:38:56I want to know if it's the same for him as it is for Lou.
0:38:56 > 0:38:59Or if it's, like, any different.
0:38:59 > 0:39:01Right, is everyone ready?
0:39:01 > 0:39:03# But I wish I could see... #
0:39:03 > 0:39:07But Louisa is there in body, not spirit.
0:39:07 > 0:39:10Feel really tired now?
0:39:10 > 0:39:12I just feel tired.
0:39:12 > 0:39:17Ashley was diagnosed with Kleine-Levin syndrome two years ago
0:39:17 > 0:39:21but he's never met another sufferer.
0:39:21 > 0:39:24Morning, morning! Hiya, I'm Rick, nice to meet you.
0:39:24 > 0:39:25And you. You all right?
0:39:25 > 0:39:26Hi, Ashley.
0:39:26 > 0:39:28- Nice to meet you.- And you.
0:39:28 > 0:39:33We've had 12 now since March 2008.
0:39:33 > 0:39:34He's had 12.
0:39:34 > 0:39:37- I've had so many this year. - We've had loads this year.
0:39:38 > 0:39:41Ashley's sleep episodes are more erratic than Louisa's,
0:39:41 > 0:39:44ranging from two weeks to six months apart.
0:39:44 > 0:39:48He saw several specialists until he was eventually diagnosed.
0:39:48 > 0:39:51When it first started, Ashley, what did you do?
0:39:51 > 0:39:53I probably thought, "Why me?"
0:39:53 > 0:39:56With all the other stuff that goes on in the world,
0:39:56 > 0:39:58with people taking drugs and stuff, It was like,
0:39:58 > 0:40:01"Why do I get it?"
0:40:01 > 0:40:03It does affect you.
0:40:03 > 0:40:05But there's ways around it.
0:40:05 > 0:40:09I've still got my driving licence and my test coming up,
0:40:09 > 0:40:14so they are not saying that they cannot give you your driving licence or anything.
0:40:14 > 0:40:19It just affects, like, two weeks of your life every time it happens.
0:40:19 > 0:40:21Louisa, she just eats everything.
0:40:21 > 0:40:25The last couple of times I haven't, I haven't eaten hardly anything.
0:40:25 > 0:40:26For about ten days,
0:40:26 > 0:40:29I only actually wanted eight meals,
0:40:29 > 0:40:33but all the other times, I'd eat loads.
0:40:33 > 0:40:37Dad, can I go home to sleep and I can come out for dinner later?
0:40:38 > 0:40:41You see Ashley wouldn't be like this if he was in one.
0:40:41 > 0:40:44She loses her spark. She's just, like,
0:40:44 > 0:40:46not as bubbly as she normally is.
0:40:46 > 0:40:51It's pretty much like looking in the mirror as such,
0:40:51 > 0:40:55to see that they know how they feel, you know, it's just hard,
0:40:55 > 0:40:59very hard to stay awake but you want to go to sleep at the same time.
0:40:59 > 0:41:01After struggling through half an hour,
0:41:01 > 0:41:04Louisa is desperate for her dad to drive her home so she can sleep.
0:41:04 > 0:41:06I'll get the car and I'll bring it round
0:41:06 > 0:41:09- and then we'll just take you home. - You won't.
0:41:09 > 0:41:13- I will. I promise. - Go and get it now, then.- I will do.
0:41:14 > 0:41:16Well, she's not comfortable, so it's not fair
0:41:16 > 0:41:20to keep her out, otherwise she will be getting stressed
0:41:20 > 0:41:24and it's not fair on her, because it's not the person she is
0:41:24 > 0:41:28and, for other people, it's like she's being a pain, but she's not,
0:41:28 > 0:41:32she only wants to go to bed. She wants to be is in her room, asleep.
0:41:34 > 0:41:35All right, babe.
0:41:35 > 0:41:38'It was real nice to meet Louisa even though'
0:41:38 > 0:41:40she wasn't completely with us as such.
0:41:40 > 0:41:42It was nice to meet the family and speak to Ross
0:41:42 > 0:41:46and the same sort of things they go through, the similarities.
0:41:46 > 0:41:49To know that you're not the only person with it.
0:41:51 > 0:41:55- LOTTIE:- It's really positive, I think, to know they're a normal family, like we are.
0:41:55 > 0:42:02The thing is, how many more children are going to be born with this condition?
0:42:02 > 0:42:03You just don't know.
0:42:03 > 0:42:05Ashley's dad was saying, "Why Ashley?"
0:42:05 > 0:42:10Why Louisa? You know. They are the questions no-one can answer.
0:42:13 > 0:42:15"Dear Dr Arnulf, my daughter Louisa
0:42:15 > 0:42:18"has suffered with KLS for the past two years."
0:42:18 > 0:42:21The Ball family are part of a research study
0:42:21 > 0:42:24at Stanford University in America.
0:42:24 > 0:42:28But they've just discovered a lead closer to home.
0:42:28 > 0:42:31A world-renowned specialist in France, and Rick hopes
0:42:31 > 0:42:33he can convince her to see Louisa.
0:42:33 > 0:42:36"You will appreciate my disappointment and desperation
0:42:36 > 0:42:41"when we speak to consultants who, unfortunately, can offer us no more than a diagnosis."
0:42:41 > 0:42:45He hopes this could be a new lead in his search for a cure.
0:42:45 > 0:42:47I suppose you've got to be realistic about it
0:42:47 > 0:42:49and say it's a rare condition
0:42:49 > 0:42:51and now we've realised there doesn't appear to be
0:42:51 > 0:42:53anyone in the UK researching it.
0:42:53 > 0:42:56We've got to go further afield to find some answers.
0:42:56 > 0:43:01If there's something that's causing a reaction, there must be
0:43:01 > 0:43:04a way of finding a cure to stop that reaction.
0:43:15 > 0:43:16It takes Louisa two days
0:43:16 > 0:43:18to get back to her normal self
0:43:18 > 0:43:22and Facebook is a good way to let her friends know how she's feeling.
0:43:24 > 0:43:27I guess it's come to the time where I begin to think, "Why me?"
0:43:27 > 0:43:31When I do come out of it, I do realise what I've missed.
0:43:31 > 0:43:34I don't think it's really sunk in yet
0:43:34 > 0:43:36that I've missed my, like, GCSEs.
0:43:38 > 0:43:42To get the results she needs for a place at college,
0:43:42 > 0:43:45Louisa's hoping the exam boards will give her grades
0:43:45 > 0:43:48in the subjects she's missed based on predictions and coursework.
0:43:48 > 0:43:50I'm lucky I've got my mock results
0:43:50 > 0:43:55to kind of back me up as well, so hopefully it will be all right.
0:43:55 > 0:43:59So we won't know until August 24th what the position is,
0:43:59 > 0:44:02because she's got to collect her exam results.
0:44:02 > 0:44:04She needs five C-or-above results.
0:44:04 > 0:44:10We're keeping our fingers crossed she'll make five C-or-aboves.
0:44:12 > 0:44:16But if she doesn't, well, we'll have to see what we can do.
0:44:16 > 0:44:21She may have missed half her exams, but now Louisa's fully awake
0:44:21 > 0:44:25and determined to make it to tonight's end-of-school prom.
0:44:25 > 0:44:29I guarantee I'll end up doing my make-up and take it all off
0:44:29 > 0:44:32and doing it again.
0:44:32 > 0:44:34I'll get the glue for your hair.
0:44:35 > 0:44:37Have you brushed my extensions?
0:44:37 > 0:44:39Mother!
0:44:39 > 0:44:42You'd think she'd be getting ready for her own prom!
0:44:43 > 0:44:47I'm pleased she's made it and she's not asleep
0:44:47 > 0:44:51because there's certain things, like exams, you can resit
0:44:51 > 0:44:53and take a second time
0:44:53 > 0:44:59but something like a prom's not going to wait for you, and if you miss it, you miss it, so I'm chuffed for her.
0:44:59 > 0:45:02# Today, this could be
0:45:02 > 0:45:04# The greatest... #
0:45:04 > 0:45:08- I feel like I'm getting married. - The stress is like getting married!
0:45:08 > 0:45:10Wow! Look at you.
0:45:10 > 0:45:15# And the world comes alive
0:45:15 > 0:45:17# And the world comes... #
0:45:17 > 0:45:20Don't you look posh? You're still allowed to kiss your dad, you know.
0:45:20 > 0:45:23- Don't rub the make up off!- Oh...
0:45:23 > 0:45:26You look really pretty!
0:45:26 > 0:45:28Ah, you look so nice!
0:45:28 > 0:45:34'There's only so much catching up you can do in a short space of time and it's tough on her.
0:45:34 > 0:45:37'I know she's probably feeling it a little bit now.
0:45:37 > 0:45:42'We've just got to try and keep her cheerful so she doesn't come out of it
0:45:42 > 0:45:43'feeling too depressed about it.'
0:45:59 > 0:46:03# I get tired and upset
0:46:03 > 0:46:07# And I'm trying to care a little less
0:46:07 > 0:46:11# When I Google I only get depressed... #
0:46:13 > 0:46:17My feet hurt so much already!
0:46:17 > 0:46:20- It doesn't feel like we're actually at prom.- It doesn't!
0:46:20 > 0:46:22It doesn't feel real.
0:46:22 > 0:46:27It doesn't feel like we're old enough to be going to prom.
0:46:27 > 0:46:30I'm glad that I made it because I know that I would miss out
0:46:30 > 0:46:34on so much if I didn't come so I'm really happy that I managed to come.
0:46:34 > 0:46:37So look at the camera - that's perfect. Say, "Cheese!"
0:46:37 > 0:46:38ALL: Cheese!
0:46:38 > 0:46:42# Pack up your troubles in your old kit bag... #
0:46:42 > 0:46:44I just kind of like hope that
0:46:44 > 0:46:48every episode I come out of is like, going to be my last one.
0:46:48 > 0:46:51Obviously it might not be, it might be.
0:46:51 > 0:46:55So I'll just take it as it comes, kind of thing.
0:46:55 > 0:47:00Just carry on, back to normal, go to a dance, see my friends,
0:47:00 > 0:47:02and my summer's started.
0:47:06 > 0:47:08But one week later...
0:47:09 > 0:47:12Lou, we're going to Grandpa's.
0:47:12 > 0:47:13Lou.
0:47:13 > 0:47:18Just before she's due to go on holiday to Spain, Louisa has fallen into another sleep episode.
0:47:18 > 0:47:20It's half past 11.
0:47:20 > 0:47:22Lou.
0:47:22 > 0:47:24Don't know.
0:47:24 > 0:47:29It was great for Louisa to get through the prom and be out with her friends
0:47:29 > 0:47:34and they had a lovely night and it's something they can remember for the rest of their lives.
0:47:34 > 0:47:36But obviously, we've got to live with
0:47:36 > 0:47:41the fact that it's reoccurred again and the consequences are
0:47:41 > 0:47:45that she's going to miss out, certainly on the start of a holiday, if not all of it.
0:47:48 > 0:47:50But there is some good news.
0:47:50 > 0:47:54Rick has received an appointment with the Kleine-Levin specialist in France.
0:47:54 > 0:47:58We got this response from Isabelle Arnulf.
0:47:58 > 0:48:03She's basically said that it would be a pleasure to see Louisa in Paris.
0:48:03 > 0:48:05Run through various scans.
0:48:05 > 0:48:07That was really encouraging
0:48:07 > 0:48:10to think that we're actually going to go and see somebody
0:48:10 > 0:48:14who's knowledgeable on the subject and can tell us what the research
0:48:14 > 0:48:18has been doing and what's ongoing and the progress that's being made.
0:48:18 > 0:48:21So, off to France we go.
0:48:30 > 0:48:32Wonder what that is.
0:48:32 > 0:48:34Think it's the Bastille, yeah?
0:48:34 > 0:48:36Quite impressive.
0:48:36 > 0:48:38Here we are.
0:48:41 > 0:48:44I'm a bit nervous cos I don't like hospitals.
0:48:44 > 0:48:47She might be the one that comes up with a cure
0:48:47 > 0:48:49and we'll be at the forefront of it.
0:48:49 > 0:48:51Fine.
0:48:51 > 0:48:53Just want to get it over and done with.
0:48:53 > 0:48:54Be OK.
0:48:58 > 0:49:01Dr Arnulf is one of the top Kleine-Levin specialists in the world
0:49:01 > 0:49:04and although Rick knows she can't offer a cure,
0:49:04 > 0:49:06he's hoping for a thorough assessment
0:49:06 > 0:49:11of Louisa's condition and some recommendations for treatment.
0:49:11 > 0:49:12- Hello!- Good morning.
0:49:12 > 0:49:15- Nice to meet you, hi. - Nice to meet you, Dr Arnulf.
0:49:15 > 0:49:19Dr Arnulf wants to do a scan on Louisa's brain to see if there are
0:49:19 > 0:49:24any abnormalities and a blood test for the team's research into a cure.
0:49:24 > 0:49:27OK, you are not too scared of coming? No?
0:49:27 > 0:49:31OK, so please come in and I'll explain you what we will do.
0:49:31 > 0:49:37Louisa's blood will be sent off for chromosome and DNA analysis.
0:49:38 > 0:49:43One hypothesis is that KLS is caused by a defective gene.
0:49:43 > 0:49:48We think it could be genetics because despite it's very rare,
0:49:48 > 0:49:54one in a million, we have 5-10% of families with Kleine-Levin
0:49:54 > 0:49:56with several members affected.
0:49:56 > 0:50:01Which is enormous when you consider the variety of the disease.
0:50:01 > 0:50:06Next, Louisa has to prepare for a special brain scan.
0:50:06 > 0:50:10Unlike CT and MRI scans, which show what the brain looks like,
0:50:10 > 0:50:13a scintigraphy scan highlights brain activity.
0:50:15 > 0:50:18We will inject a small fluid,
0:50:18 > 0:50:21which contains a radioactive tracer,
0:50:21 > 0:50:24a very small amount of radioactivity.
0:50:24 > 0:50:27You won't feel anything. After the injection, you will go
0:50:27 > 0:50:32under a gamma camera which is a functional test of your brain.
0:50:32 > 0:50:35Well, I've never had a drip in me.
0:50:35 > 0:50:37I feel like an idiot.
0:50:37 > 0:50:44Many Kleine-Levin sufferers have been shown to have abnormalities in their temporal lobe,
0:50:44 > 0:50:48an area of the brain involved in memory and behaviour.
0:50:48 > 0:50:50If this is the case with Louisa,
0:50:50 > 0:50:54it could have an impact on her long-term memory.
0:50:54 > 0:50:59Dr Arnulf is concerned that two years of recurrent Kleine-Levin episodes
0:50:59 > 0:51:02may have affected Louisa's brain function.
0:51:03 > 0:51:08We are looking at what really happens in the brain,
0:51:08 > 0:51:12if she has some long-term consequences of her episodes.
0:51:13 > 0:51:17After having one, two, three, ten, 40 episodes,
0:51:17 > 0:51:19how is the brain dealing with that?
0:51:20 > 0:51:24I think this is the worst bit. But she is coping great.
0:51:24 > 0:51:28Not too long now in there, so...
0:51:28 > 0:51:33we can get on and take her for some lunch and then see what this afternoon has.
0:51:36 > 0:51:39Later on, the scan results come through
0:51:39 > 0:51:41and abnormalities have been found.
0:51:41 > 0:51:45The family want to discuss the results in private.
0:51:45 > 0:51:49The abnormalities are in the temporal lobe, the part of the brain
0:51:49 > 0:51:52involved in memory and behaviour.
0:51:52 > 0:51:55There is a certain area that
0:51:55 > 0:51:58has a malfunction, which is the temporal lobe.
0:51:58 > 0:52:03She seemed to think that I may have had problems I might have problems with concentrating
0:52:03 > 0:52:08for a long period of time or taking longer to learn things,
0:52:08 > 0:52:13but, like, because that shows in some people, but I don't, so...
0:52:13 > 0:52:18Yeah, I mean she did indicate that other parts of the brain might be
0:52:18 > 0:52:23compensating for that and working to make sure that that doesn't happen.
0:52:23 > 0:52:27You not really had a problem with concentration or memory.
0:52:27 > 0:52:29Only when I get bored in lessons.
0:52:29 > 0:52:31Yeah, well, we all get like that!
0:52:31 > 0:52:35It may be some time before the family know if there are any effects
0:52:35 > 0:52:40on Louisa's long-term memory, but in the meantime, Dr Arnulf has suggested
0:52:40 > 0:52:45an alternative treatment, which could ease Louisa's sleep episodes.
0:52:45 > 0:52:47She's also recommended
0:52:47 > 0:52:51some course of medication which might possibly help.
0:52:51 > 0:52:55So we're going to take the prescription which she's written
0:52:55 > 0:52:59back to the consultant in London and make sure we get started with those.
0:52:59 > 0:53:05And they have still not told us what does exactly cause it, so...
0:53:05 > 0:53:08There are so many unanswered questions still,
0:53:08 > 0:53:12but that's what they're researching at the moment.
0:53:12 > 0:53:15We've got to live our lives as best we can and get on with it
0:53:15 > 0:53:18in the hope that, in the meantime, something will crop up.
0:53:23 > 0:53:28Back in Sussex, Louisa's picking up her GCSE results.
0:53:28 > 0:53:32She needs five grade Cs or above to get into college.
0:53:32 > 0:53:33Be positive, Lou.
0:53:33 > 0:53:37I don't even want to open the envelope. Can I just burn it?
0:53:41 > 0:53:43- Hi, Louisa.- Hello.
0:53:43 > 0:53:45There you go.
0:53:45 > 0:53:46Thank you.
0:53:48 > 0:53:50Can't open it!
0:54:04 > 0:54:05I'm shaking.
0:54:12 > 0:54:14SHE GASPS
0:54:16 > 0:54:18(I got an A in PE!)
0:54:21 > 0:54:24B in geography and an F in ICT.
0:54:24 > 0:54:27SHE SOBS
0:54:34 > 0:54:37Louisa knows it's not enough to get into college.
0:54:46 > 0:54:49- I think I like, shocked myself.- Why?
0:54:55 > 0:54:57Oh. Oh, well.
0:54:57 > 0:55:00All over now.
0:55:00 > 0:55:02Get on the phone to the college
0:55:02 > 0:55:06and if there is a problem, I mean, they know the history, obviously.
0:55:06 > 0:55:09If there is any problem. do let us know.
0:55:11 > 0:55:14We knew it was going to be a tough day. Everybody's there
0:55:14 > 0:55:18and they're all hyped up and the fact that you open your envelope
0:55:18 > 0:55:22and you know full well that you haven't been able to achieve
0:55:22 > 0:55:27what everyone else has, you haven't been on a level playing field.
0:55:27 > 0:55:30- LOTTIE:- Poor Lou. It would be lovely if she could have
0:55:30 > 0:55:32four or five months without an episode.
0:55:32 > 0:55:36At least then, she could make some sort of sense of life.
0:55:36 > 0:55:41Just give us three months or a final cure.
0:55:41 > 0:55:43But I think we're wishing for a miracle.
0:55:43 > 0:55:45You can only but wish, can't you?
0:55:45 > 0:55:49# Don't look so forlorn
0:55:50 > 0:55:52# Cos something's gonna come
0:55:54 > 0:55:56# I don't know where from
0:55:56 > 0:56:01# I don't know where... #
0:56:01 > 0:56:04I don't think I'll rest until everything's been done
0:56:04 > 0:56:06that possibly can be.
0:56:06 > 0:56:10I've always been convinced that there is a cure out there.
0:56:10 > 0:56:13You know, there's nothing that's not without reason.
0:56:13 > 0:56:15Somebody out there somewhere
0:56:15 > 0:56:18will have a theory or a clue that will be the right one.
0:56:18 > 0:56:23And if you've got something to cling to, then you've always got hope.
0:56:23 > 0:56:28# Always love
0:56:28 > 0:56:34# Always love
0:56:34 > 0:56:40# Always love
0:56:40 > 0:56:46# Always love
0:56:46 > 0:56:52# Always love... #
0:56:52 > 0:56:54Subtitles by Red Bee Media Ltd
0:56:54 > 0:56:55E-mail subtitling@bbc.co.uk