The Real Sleeping Beauty

Once upon a time, there was a girl who slept and slept and slept.

But this is not a fairy tale.

'For 15-year-old Louisa Ball, it has been her confusing,

'sometimes frightening reality for the past two years.'

Louisa Ball has been diagnosed with a rare medical condition

which recently caused her to hit the headlines worldwide.

Louisa suffers from a very rare disorder

which means she can drop off to sleep for up to two weeks at a time.

The condition is called Kleine-Levin Syndrome

and there is no known cure.

There are similarities between this and some other sleep disorders,

but this is very unusual in that people sleep for such long periods.

Only an estimated one in a million people suffer from the disease.

It's like I'm on drugs.

I feel as though I lose my daughter for two weeks of every month.

In the last two years, Louisa has slept through friends' birthdays,

family holidays and weeks of school.

I can't physically keep myself awake.

It's almost like there's a devil pinning her to her bed.

But now 16-year-old Louisa has to stay awake

for the biggest months of her life.

In the next two months I've obviously got

my school prom,

I leave school,

I'm going on holiday.

I've got a big dance festival.

If I had to sleep through any of them

then obviously I'd be really upset and gutted that I'm going to miss out.

Most importantly, Louisa's got to stay awake through her GCSE exams.

If I don't get the grades I achieve then I might not be able to get where I want to in life later on.

At any point she could fall into the trance-like sleep episode

her parents call the "mode".

It couldn't have been a worse week, could it, looking at that?

When in mode, Louisa sleeps for up to 22 hours a day.

When she is awake, her behaviour is radically altered.

It is such a change in her personality.

It's almost like a split personality.

There were a few times when she was having a stand-off with her mum

that you'd worry about her grabbing a kitchen knife

or doing something really... You know, worse than you'd ever imagine.

But can Louisa's dad find a way to keep her awake

for the biggest months of her life?

There's nothing without reason.

I've always been convinced that there's a cure out there.

The Ball family from Sussex

are nearing the end of a week's holiday in Spain.

Loser in the sea, no pressure!

Yeah, you've got to get the ball!

But Louisa has slept through most of it.

Lou, we're going to go off to the beach in a minute, babe.

Babe? Do you want to join us at the beach?

Huh?

Lou?

It's just a shame because it was supposed to be a family holiday,

a little break at the end of Easter, just a nice little relaxation time

before we go back to school and all the stress comes again.

But, you know, she's got to deal with it, really.

It's just a shame she's missing it all.

Louisa's family take turns to look after her.

The doctors have told them it's crucial to wake her at least once a day

to feed her and get her to the bathroom.

But it's not easy.

Lou, do you like these?

I'll go and get you a pair, if you want.

They're the sort of thing you like, aren't they?

Do you want to come and have a look?

Can I just try this on?

Because you will like them.

You'll say, "Why didn't you buy me a pair?" No?

Louisa's mum is an occupational therapist,

but when the patient is your own daughter it's tough.

I've tried before to literally force her to wake up

and she just starts swearing and gets so agitated and aggressive

and I just think that is so distressing for her.

She's been down for a week now,

so we may be halfway through an episode.

Keep our fingers crossed that within a week she's back to normal.

Back dancing and doing all the things she wants to do.

And doing some revision as well.

Back at home in Sussex, Louisa's out of her sleep episode.

Today she's back at school.

Hello, baby! I missed you so much! I've missed you, too!

Louisa's GCSEs start in four weeks' time

and she's been called in to see the headmaster.

He's well aware of Louisa's condition.

There was some head scratching at the beginning

to try and figure out

what was going on and what was the basis of the condition,

but the breakthrough,

to have the diagnosis was fantastic, I suppose more for Louisa herself

knowing that she wasn't making it up.

Come in.

Hello, Louisa. Have a seat.

We worked out you actually missed a quarter of your schooling in Year 11.

What I really want to say, the general thing I will be saying is,

it's not too late.

If you just look after yourself, keep your head,

you stand a good chance of getting, you know, a really reasonable set

of GCSEs in the summer.

I know in the past, because you have the periods of sleepfulness,

that when you're awake you want to cram lots of stuff in.

The big focus obviously for this period has got to be on the exams.

Thanks very much, Louisa.

It's a week since Louisa's last sleep episode in Spain

and, as usual, she can remember little of it.

For the first time, her family have decided to show her footage of what she's like in mode.

I look scary!

You do, yeah.

When she's in an episode, Louisa sleeps for up to 22 hours a day.

When she's woken,

she displays typical symptoms of Kleine-Levin Syndrome, irritability,

feeling in a dream-like state and binge eating.

My eyes don't look blue.

They look really dull.

I think it's because your pupils are so big when you're in a mode,

the whole of your pupil, the black...

It's like I'm on drugs.

It's just so baffling to think why would one person

in so many millions be affected by it and what brings it on?

You know, a normal life for 14 years and then, all of a sudden, bang,

you've inherited this.

I don't think it looks like me.

We'll find out a bit more as time goes by.

But Louisa doesn't have much time.

She's got a major dance competition coming up,

her school prom and her GCSEs.

My French orals are on Wednesday.

We'll speak French for the rest of the day, shall we?

Bonjour.

I know that

my grades would have been so much better, like,

if I didn't have this because, obviously, the amount of time I missed off school.

But, obviously, there's nothing I can do about it.

I'm just going to try my best.

Obviously I don't know when I'm next going to go back to sleep,

so I want to make the most of the time now. That's always what I look at

and that's what makes me get up and do stuff.

Tonight, Zoe, Louisa's best friend from dance,

is picking her up for rehearsal.

Zoe hasn't seen her since she went into mode 10 days ago.

10 days.

10 long old days.

Hey!

Louisa is a freestyle dance champion and in three weeks she is due

to take part in the Freestyle World Qualifier in Oxford.

And it's not just a hobby.

Louisa is hoping to have a career in dance.

Right, concentrate. Energy, technique, speed,

power. All of it, yes?

Unfortunately with Louisa she had a mode recently in Spain

on their holiday, so obviously if you haven't moved your body at all

for near to two weeks you will tighten up and it is harder,

so obviously Louisa does have the downside that other dancers don't.

For no fault of her own, suddenly she can't stretch, work out

and use her body in the same way,

so it makes it much more of a struggle for her.

Louisa was a typical teenager

until she developed Kleine-Levin Syndrome in October 2008.

She'd been poorly with flu and we had a call from school

and they said Louisa has fallen asleep and she's rambling and she's not making any sense.

They were quite worried because they could see that it was a different person than they were used to.

I remember sitting in an exam and I started feeling really tired

and my teacher came up to me

and was, like, "Louisa, are you OK?" I was, like, "No."

She was telling me all this stuff about how she's moving away to Spain,

just all this stuff that really wasn't true,

but that's what she was believing.

I took her straight to the GP

because we didn't know what was happening to her.

The GP went, "Whoa!"

Well, I was, like, hallucinating or something.

She was fidgeting and her facial expressions

and then she was tired and it was a case of battling to keep her awake.

After that I don't remember a thing.

Just all of a sudden I went blank.

I just slept and that was it,

that was the first time that I went into a sleep episode

for, like, 10 days.

Then I woke up and I was fine again!

But four weeks later, Louisa suffered another sleep attack.

So it was then that we started the quest of going through

all the doctors and the tests and the brain scan, MRI scan.

The family still clung to the hope

that Louisa's condition was temporary, but after several months

and many visits to specialists, they finally got a diagnosis.

They were told that Louisa had an incredibly rare sleep disorder

called Kleine-Levin Syndrome and that no-one knew what caused it.

When we first got the diagnosis it was sort of

a champagne and hangover moment.

Initially you got this great diagnosis and then she said,

"Unfortunately there isn't really a cure, but I've printed some information off for you,

"so take that away and read it."

The first stages of Louisa with the illness, I used to sit with her

for hours just stroking her head thinking, "Please, come on,

"I want you back."

She cried one night with me, "Mummy, why me? It's not fair.

"I don't want to have this."

And I just said, "Lou, at the end of the day you're special."

That's how I explained it, she was special.

It's been two weeks since Louisa's last episode

and she's deciding on her outfit for her dance competition.

My last costume was £800 and it literally had, like,

probably, a third of what stones are on there.

These are my eyelashes.

Oh, you like them.

They're really long.

Are you trying this costume on? Can you go and put it on?

Since Louisa developed Kleine-Levin Syndrome,

she's already slept through three big dance competitions.

She doesn't want to miss this one.

It's, like, one of the biggest festivals that they do

and obviously if I miss it then I am going to be really gutted.

Kleine-Levin sufferers

can go for weeks or even months without an episode.

Louisa's sleep episodes had been occurring every four weeks,

but for the first time ever, there has been an eight-week gap,

so she could now be awake for the dance competition, the school prom and her GCSEs.

I've just blocked out the last period

that she was asleep for, which ended on 29th April

and it's a question mark as to when the next one might be.

The family believe the eight-week gap could be due to a new drug

Louisa has been trying, the thyroid drug Cytomel.

Rick first heard about the drug from other Kleine-Levin sufferers in America

who claimed it had shortened their sleep episodes,

but it's not yet licensed in the UK.

I think with something as unusual as this, you've got to be prepared

to look outside the box and say, is there something else

that we're missing or we're not doing?

And whilst it might not be accepted, or run of the mill,

who's to say that it's not going to be ultimately

the cure you're looking for?

Today the family are going to see Louisa's consultant

at St George's Hospital in London.

She diagnosed Louisa two years ago and agreed to let her take

the thyroid drug under close supervision.

I think it's just a routine check-up

and, obviously, hopefully, she'll have a prescription for the Cytomel tablets.

Recently, Rick's heard from other sufferers

that the thyroid drug may not just shorten the length of an episode,

it might also delay the onset.

They're planning to discuss this with the consultant.

Louisa thinks if I give them to her this weekend coming,

because it's four weeks since she's had an episode,

she's hoping that it will make her last another four weeks, but I'm not sure.

I've got a competition this weekend so I want to start taking them because I don't want to miss it.

And, plus, I've got all my exams, as well.

We were told not to give them to her, only if we saw an episode,

so if they say no harm in trying,

we'll go for it just to help Louisa, really, and get her through eight weeks of being awake.

It's been a frustrating visit.

The consultant has given Louisa more of the thyroid drug,

but she can't confirm it will delay a sleep episode.

She just said take it as and when I have been taking it.

She said you need hundreds of patients to be on Cytomel to build up

enough information for it to go into a journal and be published.

The family still don't know if Louisa's eight week gap

was due to the thyroid drug.

Would it not be worth starting it now?

Yes, Dad. I'm agreeing with Dad, not you. Yes.

So, whatever, you know, it's a gamble, it is.

We can do it, but then it could be just a coincidence that Louisa's got the eight week gap

or it could be the drug. We still don't know, do we?

At home, Mum is re-reading about Cytomel.

It's the most potent form of thyroid hormone.

It acts on the body to increase the metabolic rate.

If someone told me three years ago I'd be giving my daughter

a drug that was not licensed in this country

and we don't really know a lot about,

I would say no way, Jose!

But when you live with your daughter, like...

you'd do anything to try and help her

and stop what she's going through.

It's the weekend of the dance competition and four weeks since Louisa's last episode.

She and her family have made a decision.

As her consultant is happy she's not suffering any ill effects from the thyroid drug,

she's going to take it early in the hope that it could stop a sleep episode coming on.

How long's it take to get there?

Mum's driving? No, it should be about two and a half hours, three? Yeah?

Yeah.

After weeks of preparation, Louisa and her dance friends

arrive at the Freestyle World Qualifier in Oxfordshire.

With over 200 dancers, competition will be tough

and there's no guarantee Louisa will even make it through the first round.

She's just admitted she's really nervous,

more nervous than she normally is.

The worst thing that could happen is that I don't get a recall.

MUSIC STARTS

Go on, babe!

Some judges like different things, don't they?

It's, like, technique, faces.

Pointy toes.

Fast things. Runs, flexibility.

-My mum says, "PSS - Power, Speed and Smile!"

-Is that what your mum says?

Yeah. And she says, "If you don't get a trophy you're walking home, so there's some incentive for you!"

I'm nervous.

Louisa gets the recall she wants into the final.

Go, Louisa!

MUSIC STARTS

MUSIC FADES

-How did that feel?

-It was all right.

-You were really fast.

-I won't win.

-You don't know.

I doubt it.

Over 16.

Into fifth place, 22.

Well done. Fourth, 153.

Third, 84.

Give them a cheer! Second, 149.

Louisa takes first place.

I'm really proud of her. And I think it's really good for her confidence.

Sleeping for half her life, it's quite hard to get your confidence back up and get back out there.

It's a big day for Louisa - the official last day of school before GCSEs start.

It doesn't feel real, doesn't feel as if we're actually leaving.

Yeah, it feels like a dream.

I think it's going to feel really weird going to college,

it's going to be so much different, so much more independent.

The next time her year group will all be together again is the end of school prom in a month's time.

That's my dress.

I don't want Louisa to miss any of the prom.

We're all looking forward to it.

And not to have her there would make it a shame for everyone.

-It would be like someone's missing. It would be horrible.

-It wouldn't be the same.

I'd do anything to keep her awake for that night.

Sellotape her eyes open!

Louisa's been looking forward to her school prom for months.

Choosing the perfect dress is crucial, so Lottie's taking her shopping.

I like this colour.

It's a beautiful colour, the turquoise.

-She's beautiful. I'm her mum - I'm allowed to say that, aren't I?

-Yes.

We had to come today to grab the moment while she's awake.

Because she could go to sleep in a couple of weeks' time.

We just don't know.

Louisa spots the dress she loves.

It's right up there.

The wedding dress!

The ruched one, 1950s-style? I know, it's a great dress.

Your daughter's got expensive taste.

Yes, I do know my daughter's got expensive taste.

I didn't think I'd be standing here putting a wedding dress on you, Lou.

Do you like the back?

Yeah.

Yeah, I like that.

Yeah, I think it's got to be that one.

Louisa and her mum are sold.

Now they just have to convince Dad.

The price she quoted was around about the £500 mark.

Dad's just fallen over...

and needs a stiff drink, and it's not even half past six.

We want a guarantee you're not going to fall asleep.

That's what I said. It's worth every penny if she's awake for it.

It's not going to be worth a penny if she's asleep.

We just have to win the Lottery or rob a bank now. What do you reckon?

One or the other.

It's now been five weeks since Louisa's last sleep episode, and she's started her exams.

-Right, have a good day. And good luck, Lou. Let us know how you get on. Ciao, ciao.

-Bye.

She's sat the first part of chemistry, physics and biology

and is squeezing in extra tuition in French.

She needs five passes to get into college to study sport and dance.

With all the time she's missed, she needs the extra help.

She's capable, that's the thing.

She can do it, and I'm just making sure now that she gets the grade

that she deserves. I feel she's on track.

During the weekend, Louisa is sleeping more and more.

You going to get up do some revision?

In a bit.

In a bit? Yeah? OK, then.

Unlike sufferers of narcolepsy, Kleine-Levin sufferers don't suddenly fall asleep.

Their episodes come on gradually.

Every day that she takes longer to wake up, that's just a normal typical teenage thing.

When they're on school holidays, they like a lie-in.

She's always usually up by lunchtime,

Even if she's had a late night with her friends.

If it goes past lunchtime, I always think,

"Oh, no, is she going into mode?"

Hi, babe.

Lou?

Lou, hon?

I've started Zoe's hair.

Do you want to finish it?

Yeah?

I'm going to open this a bit, Lou,

let some air in, cos it's still daylight.

I know you've been in bed all day, but...

TELEVISION BLARES

Can we turn it down now? Lou's got up to do your hair.

Hi!

Turn it down, Ross.

It's as if I need to take something to liven me up.

-Like what?

-A Red Bull.

Can I have one and see how I am?

Cos at the moment, I'm awake and I feel all right,

I just don't feel like I'm 100% here.

You don't feel here?

Louisa takes a dose of the thyroid drug,

hoping it will stave off an episode.

You all right? You going to go to bed?

Yeah.

Just like how she's so snappy.

It upsets all of us really. But what's even worse is the fact,

what's going to happen? Is she not going to be able to do her GCSEs?

Is she going to have to do them and then muck them up?

It's just quite hard.

Louisa sets her alarm for 7am the next day.

Do you reckon you can just will yourself to stay awake?

I'll try my very hardest, I'll tell you that.

'We can usually tell signs.

'I don't usually look out for them because I try to avoid them.'

I hope this Cytomel works, whatever it is, because she misses out on things.

There's things planned.

We've just got to hope she doesn't go in.

I've got two of my most important exams next week

and I really don't want to miss them.

Hopefully I'll stay awake.

It's the day before Louisa's maths exam.

ALARM CLOCK BLEEPS

ALARM CLOCK CONTINUES TO BLEEP

Despite taking the thyroid drug early, Louisa has only made it

five-and-a-half weeks, and is now fully in sleep mode.

All right, Lou?

It couldn't have been a worse week, could it, looking at that?

Maths, English, French, English and Maths this week.

She's not normally going to be right for next week,

I wouldn't have thought.

Rick gets straight on to the school to see if there's a way

to stop Louisa failing her exams.

Pat, hi, it's Rick Ball, Louisa's dad.

Unfortunately, Louisa's gone into sleep mode again,

and she's got her maths GCSE.

OK. Seems a bit unfair, doesn't it?

You'd have thought there'd be something in place where she could take an alternative exam.

We'll have to take each day as it comes, and each subject as it comes.

OK. Thanks very much.

Bye.

That wasn't particularly good news. What they're saying is...

..as the course work isn't 40%, they can't give her a grade.

And she can't resit the exam because it's not secure.

So it's all pretty unhelpful in terms of, you think,

"What has she being doing for the last three years?"

She won't get a maths grade.

She knows she needs five grade-C passes or above

to get accepted into the college.

For a start, the maths today

looks like it's going to be a no-no if they can't give her a grade.

I always was led to believe there would be some form of alternative,

whether or not it was sitting another paper.

But all a bit unchartered territory for us at the moment.

However hard it is, I would love Lou

to get up tomorrow morning, go into school and do her exams.

Physically, I could not dress her, you couldn't get her up.

I don't know, some people may think she's faking it, but I can assure you she's definitely not.

It's almost like there's a devil pinning her to her bed.

As Louisa sleeps through day after day of exams, life continues to pass by without her.

Today was her English GCSE. Yesterday obviously was maths.

that's two important ones down.

But we're waiting to hear from school to see what they're going to do about discussing it with the exam boards.

I hope they do accept her.

She's tried so hard.

They should. After everything she's gone through,

it's such a shame it comes NOW.

It's a nice day and I've opened the curtains and opened her window, and she's still fast asleep.

She's well into her mode now,

it's really intense, and it's a real deep sleep.

During a sleep episode, Louisa's family never leave her on her own.

They have to try to wake her at least once a day to eat and drink,

and go to the bathroom.

I feel physically sick having to wake her.

But it's hard work.

Lou, darling.

Babe. Lou.

-Lou.

-What?

Do you want to have something to eat?

Yeah.

-SHE SIGHS

-Dear me.

Come on, Lou. Lou.

Lou!

Yes, all right. I'm getting sick of your voice.

Yeah, so am I, having to ask you, so let's move, yeah?

The way she is when she's in this mode is very rude and obnoxious.

After 15 hours in bed, Lottie finally manages to wake Louisa for food.

Sit.

Yeah?

-I need a drink.

-What do you want to drink? I've just taken you up one.

What do you want? Do you want lemonade or something?

Huh?

She just looks so skinny.

I always notice when she gets up

and puts clothes on, cos she's in her pyjamas normally.

Do you know how many days you've been asleep now?

Um. What's today?

Isn't it like Thursday today?

Five days, or six days?

It's Wednesday today.

DOOR BELL RINGS

Hello!

ALL: Hi!

You all right, girls?

Seven days and five exams have passed.

And Louisa's friends want to let her know that they're thinking about her.

Lou, honey bun, you've got some visitors.

Do you want to see them?

It's Ellie. Ellie and Lucy.

No.

No?

They've just come round.

OK, darling, I'll tell them.

They just came round to see how you were after their exam.

Sorry, girls, no, she says it's nice of you to come around

"but I don't want to see them"!

ALL: Awww!

We hope she feels better.

Later, Louisa's mum manages to get her up for an hour to eat.

Do you know who came round to see you today?

Who?

Ellie and... Is it Lucy, the dark-haired one?

But Louisa has no recollection of her friends' visit.

Yeah, they came round to see you.

I asked if they could come in but you said no.

Do you not remember?

They came round after their last exam this week.

Ellie said she's failed.

'She's very cold and distant.'

It's the yes-no answers, really.

I try not to think about the future really,

but it is there at the back of your mind.

How is she going to manage her adult life when she is in episode?

Who's going to look after her kids?

Out of the blue, Lottie gets a surprising phone call.

Does he communicate when he's awake?

Or is he quite trance-like?

Louisa is not the only Kleine-Levin sufferer in the UK.

The mother of an 18-year-old boy called Ashley

has found Lottie's details through the KLS support group.

Ashley lives in Cambridge and has also been diagnosed

with the condition.

They don't believe you, do they? Do you think they don't believe you?

They always say, "They can't possibly sleep that long."

That's fine. Nice to speak to you, you're not alone now.

Lottie and Ashley's mum arrange for the two families to meet up.

Take care, bye.

Yeah, it's quite nice to talk to somebody.

It's nice to know that we are not the only people now.

It's nice for Louisa as well, because she won't feel so isolated and alone.

# Up on Melancholy Hill

# There's a plastic tree... #

I like those, but they're not high enough.

Poor Lou. All her friends are getting excited, going prom-shoe shopping.

My dress is sort of like that colour blue, but a lot darker.

They're definitely high enough! Otherwise I'd fall over!

The last two weeks of school

is such a big step in her life that she's missed.

She's not going to be able to look back on, "Oh, my God,

"what we did on our last day!"

Which is quite upsetting because you can't turn back the clock for that.

It's been ten days and ten nights since Louisa entered sleep mode.

Finally, she has woken of her own accord.

But it will be a while before she's totally back to normal.

Now, when you talk,

your voice sounds more clear, whereas before it were more

squeaky and that's why I was like, "Oh, shut your mouth!"

-LOTTIE LAUGHS

-Thanks(!)

I need to go and scrub this fake tan off and have a bath

and wash my hair.

The other Kleine-Levin sufferer, Ashley, and his family,

are travelling down from Cambridge to meet the Balls.

# ..so quiet

# You move so fast makes me feel lazy

# Let's... #

Don't know how to explain it. I suppose excited and nervous.

I'm just a bit gutted that Lou's not herself.

But hopefully she'll get through an hour or two with them.

Louisa is in the transition phase of a sleep episode,

but Ashley's family should know what that's like.

I want to know if it's the same for him as it is for Lou.

Or if it's, like, any different.

Right, is everyone ready?

# But I wish I could see... #

But Louisa is there in body, not spirit.

Feel really tired now?

I just feel tired.

Ashley was diagnosed with Kleine-Levin syndrome two years ago

but he's never met another sufferer.

Morning, morning! Hiya, I'm Rick, nice to meet you.

And you. You all right?

Hi, Ashley.

-Nice to meet you.

-And you.

We've had 12 now since March 2008.

He's had 12.

-I've had so many this year.

-We've had loads this year.

Ashley's sleep episodes are more erratic than Louisa's,

ranging from two weeks to six months apart.

He saw several specialists until he was eventually diagnosed.

When it first started, Ashley, what did you do?

I probably thought, "Why me?"

With all the other stuff that goes on in the world,

with people taking drugs and stuff, It was like,

"Why do I get it?"

It does affect you.

But there's ways around it.

I've still got my driving licence and my test coming up,

so they are not saying that they cannot give you your driving licence or anything.

It just affects, like, two weeks of your life every time it happens.

Louisa, she just eats everything.

The last couple of times I haven't, I haven't eaten hardly anything.

For about ten days,

I only actually wanted eight meals,

but all the other times, I'd eat loads.

Dad, can I go home to sleep and I can come out for dinner later?

You see Ashley wouldn't be like this if he was in one.

She loses her spark. She's just, like,

not as bubbly as she normally is.

It's pretty much like looking in the mirror as such,

to see that they know how they feel, you know, it's just hard,

very hard to stay awake but you want to go to sleep at the same time.

After struggling through half an hour,

Louisa is desperate for her dad to drive her home so she can sleep.

I'll get the car and I'll bring it round

-and then we'll just take you home.

-You won't.

-I will. I promise.

-Go and get it now, then.

-I will do.

Well, she's not comfortable, so it's not fair

to keep her out, otherwise she will be getting stressed

and it's not fair on her, because it's not the person she is

and, for other people, it's like she's being a pain, but she's not,

she only wants to go to bed. She wants to be is in her room, asleep.

All right, babe.

'It was real nice to meet Louisa even though'

she wasn't completely with us as such.

It was nice to meet the family and speak to Ross

and the same sort of things they go through, the similarities.

To know that you're not the only person with it.

-LOTTIE:

-It's really positive, I think, to know they're a normal family, like we are.

The thing is, how many more children are going to be born with this condition?

You just don't know.

Ashley's dad was saying, "Why Ashley?"

Why Louisa? You know. They are the questions no-one can answer.

"Dear Dr Arnulf, my daughter Louisa

"has suffered with KLS for the past two years."

The Ball family are part of a research study

at Stanford University in America.

But they've just discovered a lead closer to home.

A world-renowned specialist in France, and Rick hopes

he can convince her to see Louisa.

"You will appreciate my disappointment and desperation

"when we speak to consultants who, unfortunately, can offer us no more than a diagnosis."

He hopes this could be a new lead in his search for a cure.

I suppose you've got to be realistic about it

and say it's a rare condition

and now we've realised there doesn't appear to be

anyone in the UK researching it.

We've got to go further afield to find some answers.

If there's something that's causing a reaction, there must be

a way of finding a cure to stop that reaction.

It takes Louisa two days

to get back to her normal self

and Facebook is a good way to let her friends know how she's feeling.

I guess it's come to the time where I begin to think, "Why me?"

When I do come out of it, I do realise what I've missed.

I don't think it's really sunk in yet

that I've missed my, like, GCSEs.

To get the results she needs for a place at college,

Louisa's hoping the exam boards will give her grades

in the subjects she's missed based on predictions and coursework.

I'm lucky I've got my mock results

to kind of back me up as well, so hopefully it will be all right.

So we won't know until August 24th what the position is,

because she's got to collect her exam results.

She needs five C-or-above results.

We're keeping our fingers crossed she'll make five C-or-aboves.

But if she doesn't, well, we'll have to see what we can do.

She may have missed half her exams, but now Louisa's fully awake

and determined to make it to tonight's end-of-school prom.

I guarantee I'll end up doing my make-up and take it all off

and doing it again.

I'll get the glue for your hair.

Have you brushed my extensions?

Mother!

You'd think she'd be getting ready for her own prom!

I'm pleased she's made it and she's not asleep

because there's certain things, like exams, you can resit

and take a second time

but 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.

# Today, this could be

# The greatest... #

-I feel like I'm getting married.

-The stress is like getting married!

Wow! Look at you.

# And the world comes alive

# And the world comes... #

Don't you look posh? You're still allowed to kiss your dad, you know.

-Don't rub the make up off!

-Oh...

You look really pretty!

Ah, you look so nice!

'There's only so much catching up you can do in a short space of time and it's tough on her.

'I know she's probably feeling it a little bit now.

'We've just got to try and keep her cheerful so she doesn't come out of it

'feeling too depressed about it.'

# I get tired and upset

# And I'm trying to care a little less

# When I Google I only get depressed... #

My feet hurt so much already!

-It doesn't feel like we're actually at prom.

-It doesn't!

It doesn't feel real.

It doesn't feel like we're old enough to be going to prom.

I'm glad that I made it because I know that I would miss out

on so much if I didn't come so I'm really happy that I managed to come.

So look at the camera - that's perfect. Say, "Cheese!"

ALL: Cheese!

# Pack up your troubles in your old kit bag... #

I just kind of like hope that

every episode I come out of is like, going to be my last one.

Obviously it might not be, it might be.

So I'll just take it as it comes, kind of thing.

Just carry on, back to normal, go to a dance, see my friends,

and my summer's started.

But one week later...

Lou, we're going to Grandpa's.

Lou.

Just before she's due to go on holiday to Spain, Louisa has fallen into another sleep episode.

It's half past 11.

Lou.

Don't know.

It was great for Louisa to get through the prom and be out with her friends

and they had a lovely night and it's something they can remember for the rest of their lives.

But obviously, we've got to live with

the fact that it's reoccurred again and the consequences are

that she's going to miss out, certainly on the start of a holiday, if not all of it.

But there is some good news.

Rick has received an appointment with the Kleine-Levin specialist in France.

We got this response from Isabelle Arnulf.

She's basically said that it would be a pleasure to see Louisa in Paris.

Run through various scans.

That was really encouraging

to think that we're actually going to go and see somebody

who's knowledgeable on the subject and can tell us what the research

has been doing and what's ongoing and the progress that's being made.

So, off to France we go.

Wonder what that is.

Think it's the Bastille, yeah?

Quite impressive.

Here we are.

I'm a bit nervous cos I don't like hospitals.

She might be the one that comes up with a cure

and we'll be at the forefront of it.

Fine.

Just want to get it over and done with.

Be OK.

Dr Arnulf is one of the top Kleine-Levin specialists in the world

and although Rick knows she can't offer a cure,

he's hoping for a thorough assessment

of Louisa's condition and some recommendations for treatment.

-Hello!

-Good morning.

-Nice to meet you, hi.

-Nice to meet you, Dr Arnulf.

Dr Arnulf wants to do a scan on Louisa's brain to see if there are

any abnormalities and a blood test for the team's research into a cure.

OK, you are not too scared of coming? No?

OK, so please come in and I'll explain you what we will do.

Louisa's blood will be sent off for chromosome and DNA analysis.

One hypothesis is that KLS is caused by a defective gene.

We think it could be genetics because despite it's very rare,

one in a million, we have 5-10% of families with Kleine-Levin

with several members affected.

Which is enormous when you consider the variety of the disease.

Next, Louisa has to prepare for a special brain scan.

Unlike CT and MRI scans, which show what the brain looks like,

a scintigraphy scan highlights brain activity.

We will inject a small fluid,

which contains a radioactive tracer,

a very small amount of radioactivity.

You won't feel anything. After the injection, you will go

under a gamma camera which is a functional test of your brain.

Well, I've never had a drip in me.

I feel like an idiot.

Many Kleine-Levin sufferers have been shown to have abnormalities in their temporal lobe,

an area of the brain involved in memory and behaviour.

If this is the case with Louisa,

it could have an impact on her long-term memory.

Dr Arnulf is concerned that two years of recurrent Kleine-Levin episodes

may have affected Louisa's brain function.

We are looking at what really happens in the brain,

if she has some long-term consequences of her episodes.

After having one, two, three, ten, 40 episodes,

how is the brain dealing with that?

I think this is the worst bit. But she is coping great.

Not too long now in there, so...

we can get on and take her for some lunch and then see what this afternoon has.

Later on, the scan results come through

and abnormalities have been found.

The family want to discuss the results in private.

The abnormalities are in the temporal lobe, the part of the brain

involved in memory and behaviour.

There is a certain area that

has a malfunction, which is the temporal lobe.

She seemed to think that I may have had problems I might have problems with concentrating

for a long period of time or taking longer to learn things,

but, like, because that shows in some people, but I don't, so...

Yeah, I mean she did indicate that other parts of the brain might be

compensating for that and working to make sure that that doesn't happen.

You not really had a problem with concentration or memory.

Only when I get bored in lessons.

Yeah, well, we all get like that!

It may be some time before the family know if there are any effects

on Louisa's long-term memory, but in the meantime, Dr Arnulf has suggested

an alternative treatment, which could ease Louisa's sleep episodes.

She's also recommended

some course of medication which might possibly help.

So we're going to take the prescription which she's written

back to the consultant in London and make sure we get started with those.

And they have still not told us what does exactly cause it, so...

There are so many unanswered questions still,

but that's what they're researching at the moment.

We've got to live our lives as best we can and get on with it

in the hope that, in the meantime, something will crop up.

Back in Sussex, Louisa's picking up her GCSE results.

She needs five grade Cs or above to get into college.

Be positive, Lou.

I don't even want to open the envelope. Can I just burn it?

-Hi, Louisa.

-Hello.

There you go.

Thank you.

Can't open it!

I'm shaking.

SHE GASPS

(I got an A in PE!)

B in geography and an F in ICT.

SHE SOBS

Louisa knows it's not enough to get into college.

-I think I like, shocked myself.

-Why?

Oh. Oh, well.

All over now.

Get on the phone to the college

and if there is a problem, I mean, they know the history, obviously.

If there is any problem. do let us know.

We knew it was going to be a tough day. Everybody's there

and they're all hyped up and the fact that you open your envelope

and you know full well that you haven't been able to achieve

what everyone else has, you haven't been on a level playing field.

-LOTTIE:

-Poor Lou. It would be lovely if she could have

four or five months without an episode.

At least then, she could make some sort of sense of life.

Just give us three months or a final cure.

But I think we're wishing for a miracle.

You can only but wish, can't you?

# Don't look so forlorn

# Cos something's gonna come

# I don't know where from

# I don't know where... #

I don't think I'll rest until everything's been done

that possibly can be.

I've always been convinced that there is a cure out there.

You know, there's nothing that's not without reason.

Somebody out there somewhere

will have a theory or a clue that will be the right one.

And if you've got something to cling to, then you've always got hope.

# Always love

# Always love

# Always love

# Always love

# Always love... #

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