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0:00:21 > 0:00:25- This year, I've been privileged to - get to know twins from Llanelli...
0:00:25 > 0:00:29- ..who suffer from a cruel - and unique disorder.
0:00:29 > 0:00:32- This film captures every aspect - of their lives.
0:00:32 > 0:00:36- The girls are keen to tell - their story while they still can.
0:00:36 > 0:00:40- Though they're from - a Welsh-speaking background...
0:00:40 > 0:00:43- ..the illness - has rendered them mute.
0:00:43 > 0:00:48- Bound by an electronic speech aid, - they have lost their mother tongue.
0:00:48 > 0:00:51- They can now - only communicate in English.
0:00:51 > 0:00:54- This is their story - in their own words.
0:01:08 > 0:01:10- Hi, I'm Kirstie.
0:01:10 > 0:01:14- And I'm Catherine. - People know us as the Fields Twins.
0:01:17 > 0:01:21- We suffer from - a unique neurological condition...
0:01:21 > 0:01:25- ..that's slowly taking away - all our muscle control.
0:01:25 > 0:01:27- We both suffer from painful spasms.
0:01:28 > 0:01:32- We are the only people in the world - who have this illness...
0:01:32 > 0:01:36- ..so the doctors have named it - after us - Fields Condition.
0:01:39 > 0:01:42- We are not expected - to live very long.
0:01:42 > 0:01:45- No-one knows for sure - what is ahead of us...
0:01:45 > 0:01:50- ..but the doctors have no cure and - we've started going to a hospice.
0:01:56 > 0:01:58- We've lost our mobility...
0:01:59 > 0:02:01- ..and a few years ago, - we lost our voices.
0:02:02 > 0:02:06- This year, as we turn 18, we wanted - to make this film together...
0:02:06 > 0:02:09- ..to share our thoughts - on our world...
0:02:10 > 0:02:12- ..while we still can.
0:02:12 > 0:02:14- Our lives can be really scary...
0:02:14 > 0:02:16- ..but we have not lost heart.
0:02:17 > 0:02:19- We try to face the world - with a smile.
0:02:25 > 0:02:26- This is our story.
0:02:27 > 0:02:29- In our own words.
0:02:44 > 0:02:47- These are the girls' - new means of communication.
0:02:48 > 0:02:53- These machines will enable them - to speak and express their emotions.
0:02:59 > 0:03:04- In order to tell them apart, Kirstie - has chosen an Australian accent...
0:03:04 > 0:03:08- ..while Catherine - has chosen an American accent.
0:03:10 > 0:03:13- Today, they are being taught - how to use the machines.
0:03:14 > 0:03:16- Kirstie is already misbehaving.
0:03:17 > 0:03:21- Already I can say things - I've wanted to say for a long time.
0:03:27 > 0:03:31- Mam, do you and Dadi have sex?
0:03:33 > 0:03:34- Kirst!
0:03:34 > 0:03:36- Kirst!- - That's personal!
0:03:37 > 0:03:40- I love winding Mami up.
0:03:40 > 0:03:45- Kirstie is so cheeky. What she says - is always so embarrassing.
0:03:45 > 0:03:47- And Cath's hiding!
0:03:47 > 0:03:49- And Cath's hiding!- - But I love her to bits.
0:03:49 > 0:03:52- Before they had - the communication aid...
0:03:52 > 0:03:55- ..the only way they could...
0:03:55 > 0:03:57- ..if they wanted to tell someone...
0:03:57 > 0:04:01- For me, I could - have a conversation with them...
0:04:01 > 0:04:03- ..by asking them questions...
0:04:03 > 0:04:09- ..and they'd answer - with a thumbs up...
0:04:09 > 0:04:11- ..which means yes...
0:04:11 > 0:04:15- ..and a shake of the head for no.
0:04:15 > 0:04:19- They can now have conversations - with everybody.
0:04:19 > 0:04:23- Once they've picked it up, I think - there'll be no stopping them.
0:04:24 > 0:04:26- Do you remember the Ty Hafan button?
0:04:27 > 0:04:29- Welsh is our first language...
0:04:29 > 0:04:33- ..and we think everybody in Wales - should speak it.
0:04:34 > 0:04:40- As you can tell, unfortunately, - the machine can't speak Welsh!
0:04:41 > 0:04:44- But to be honest, I am happy - to be able to speak at all.
0:04:45 > 0:04:47- I'm excited - they have their voices back.
0:04:48 > 0:04:50- Just for the little things.
0:04:50 > 0:04:53- They can argue - and quarrel with each other now!
0:04:54 > 0:04:59- They can sit there - and just have chit-chats.
0:04:59 > 0:05:02- Without the communication aid...
0:05:04 > 0:05:07- ..if it's just the girls and me - at home...
0:05:07 > 0:05:10- ..mine is the only voice - you can hear.
0:05:10 > 0:05:12- # Merry Christmas
0:05:12 > 0:05:15- # And a Happy New Year #
0:05:15 > 0:05:17- Go and fetch your sacks then!
0:05:19 > 0:05:21- Dadi, get up!
0:05:23 > 0:05:25- Don't open anything yet.
0:05:27 > 0:05:31- We remember loads about life - before we got ill.
0:05:31 > 0:05:36- I really like watching - old home videos. It's a laugh.
0:05:40 > 0:05:42- I enjoy the memories...
0:05:42 > 0:05:47- ..but it makes me sad to think - I can't do those things any more.
0:05:47 > 0:05:51- When they were young, Kirstie - and Catherine were full of energy...
0:05:51 > 0:05:54- ..singing and dancing - with their friends.
0:05:54 > 0:05:58- # Sha-la-la-la-la-la-la-la #
0:05:58 > 0:06:02- Gradually, from the age of four - onwards, they both began to change.
0:06:03 > 0:06:07- They noticed they were clumsy and - would fall over more than others.
0:06:08 > 0:06:13- When they visited the doctors - for answers, none came.
0:06:13 > 0:06:15- Living with Fields Condition...
0:06:15 > 0:06:19- ..is really difficult - and it's getting worse.
0:06:19 > 0:06:21- It sucks.
0:06:23 > 0:06:24- Well done.
0:06:34 > 0:06:35- Hello!
0:06:35 > 0:06:40- For the past two years, the family - has been coming to Ty Hafan.
0:06:40 > 0:06:43- The hospice provides care - for those children...
0:06:43 > 0:06:47- ..who doctors believe - won't live beyond the age of 19.
0:06:47 > 0:06:52- That's a really scary thought - but Ty Hafan isn't a scary place.
0:06:52 > 0:06:58- We love it here. They look after us - in so many different ways.
0:06:58 > 0:07:02- It was difficult when we - actually received the letter...
0:07:02 > 0:07:06- ..telling us - we had been accepted to go there...
0:07:06 > 0:07:09- ..because you have to fulfil - a certain criteria...
0:07:09 > 0:07:12- ..and not everyone is eligible.
0:07:12 > 0:07:14- You are reviewed annually.
0:07:14 > 0:07:17- When we received the letter - last year...
0:07:17 > 0:07:20- ..telling us - the girls had been accepted...
0:07:21 > 0:07:23- ..the reality of the situation - hit us.
0:07:23 > 0:07:25- I was chuffed...
0:07:25 > 0:07:29- ..but the reality of why - they had been accepted hit home.
0:07:29 > 0:07:32- I had to tell the girls about it.
0:07:34 > 0:07:36- When it came to telling them...
0:07:37 > 0:07:41- ..I said that some children - go there to die...
0:07:41 > 0:07:46- ..because they only live - a very short life.
0:07:47 > 0:07:51- Like everyone else, I don't know - if it's going to happen...
0:07:51 > 0:07:54- ..or rather - when it's going to happen.
0:07:54 > 0:07:58- Neither you or I know. No-one knows - when they're going to die.
0:07:58 > 0:08:02- But by going - to somewhere like Ty Hafan...
0:08:02 > 0:08:04- ..the girls can see...
0:08:08 > 0:08:12- I know it's difficult - when they see friends dying...
0:08:12 > 0:08:17- ..but it's life, and you can't - protect them from everything.
0:08:17 > 0:08:21- They have to know - about these things.
0:08:21 > 0:08:26- If you wrap them in cotton wool...
0:08:26 > 0:08:28- ..it's the wrong thing to do.
0:08:28 > 0:08:32- But yet you've got to be sensitive - about things too.
0:08:35 > 0:08:40- Hayley Mason works with the girls - at home as well as at the hospice.
0:08:40 > 0:08:43- A handprint to put on the wall, - so today...
0:08:43 > 0:08:47- Hayley is nutty, kind - and a beautiful person. We love her.
0:08:48 > 0:08:50- That is not me!
0:08:52 > 0:08:53- Excuse you!
0:08:53 > 0:08:58- They can't speak, but it doesn't - stop me asking them questions...
0:08:59 > 0:09:03- ..and speaking to them as I would do - with anyone else who can speak.
0:09:03 > 0:09:06- But it is difficult.
0:09:07 > 0:09:12- In a way, the girls' feelings - are stuck in their heads.
0:09:12 > 0:09:15- It's difficult for them...
0:09:15 > 0:09:18- ..to express how they feel...
0:09:18 > 0:09:23- ..how things are going - or if they are worried about things.
0:09:24 > 0:09:28- But it's important to do that - because they do have things to say.
0:09:28 > 0:09:31- It's important to do that.
0:09:38 > 0:09:43- For six months, Hayley's focus - has been on helping the girls...
0:09:44 > 0:09:47- ..to share their emotions - by using the communication aids.
0:09:48 > 0:09:51- We used to talk at night - and put the world to rights.
0:09:51 > 0:09:55- Kirstie is the noisy one - and she would jabber on all night.
0:09:56 > 0:10:00- We talked a lot of crap. - I miss those chats.
0:10:02 > 0:10:05- Now we have to lie there - next to each other in silence.
0:10:06 > 0:10:08- It sucks.
0:10:08 > 0:10:12- So there's nothing off limits? - Are you sure? I'm just checking.
0:10:13 > 0:10:16- Using our speech aids - to talk to someone...
0:10:16 > 0:10:19- ..has opened up - a whole new world for us.
0:10:19 > 0:10:22- We hope that listening - to these conversations...
0:10:22 > 0:10:27- ..will give you a better - understanding of our lives.
0:10:28 > 0:10:32- The only one who knows what you're - going through is Catherine...
0:10:32 > 0:10:37- ..and the only one who knows what - you're going through is Kirstie...
0:10:37 > 0:10:39- ..yet you can't speak about it.
0:10:39 > 0:10:41- That's pretty pants.
0:10:42 > 0:10:44- That's pretty pants.
0:10:45 > 0:10:47- Miss it.
0:10:47 > 0:10:51- You miss being able to have - a good chat with your sister?
0:10:51 > 0:10:53- I bet you do, sweetheart.
0:11:00 > 0:11:02- How hard it is. How hard it is.
0:11:03 > 0:11:06- You want to say to Kirstie - how hard it is?
0:11:10 > 0:11:13- Is that something - you think about every day?
0:11:19 > 0:11:23- Would it help if you could talk - to your sister a bit more about it?
0:11:24 > 0:11:27- That's something we can do together, - the three of us.
0:11:28 > 0:11:30- Yeah, that'd be good, wouldn't it?
0:11:30 > 0:11:34- We can have some time together, - the three of us. Yeah?
0:11:35 > 0:11:38- Then you can have time - with each other...
0:11:38 > 0:11:40- ..to talk about different things.
0:11:43 > 0:11:45- Are you tired now, sweetheart?
0:11:45 > 0:11:49- Yes. It's hard work, isn't it?
0:11:53 > 0:11:56- Shall we finish for the day? Yes?
0:12:11 > 0:12:11- .
0:12:15 > 0:12:15- Subtitles
0:12:15 > 0:12:17- Subtitles- - Subtitles
0:12:21 > 0:12:25- Kirstie and Catherine Fields - live in Bryn near Llanelli.
0:12:25 > 0:12:28- Their parents are Lyn and Chris.
0:12:29 > 0:12:31- Dadi is sarcastic and grumpy...
0:12:31 > 0:12:35- ..and he swears a lot, - but he has a wicked sense of humour.
0:12:38 > 0:12:40- Mami is funny and lovable.
0:12:40 > 0:12:44- She looks after us - and she thinks about everyone.
0:12:44 > 0:12:47- They both have hearts of gold.
0:12:57 > 0:13:02- The girls are having a makeover - and they're having their hair done.
0:13:02 > 0:13:04- They're having a photo shoot.
0:13:05 > 0:13:09- The girls are doing - what other girls of their age do.
0:13:10 > 0:13:11- They're being pampered.
0:13:12 > 0:13:14- One of the best things - about Ty Hafan...
0:13:14 > 0:13:17- ..is that we get treated normally.
0:13:17 > 0:13:20- Some people - tend to treat us like babies.
0:13:20 > 0:13:24- Just because I can't talk, - they patronize me...
0:13:24 > 0:13:27- ..and treat me like I'm stupid.
0:13:27 > 0:13:29- They make me angry too.
0:13:29 > 0:13:34- I know they're trying to be nice - but they are just being idiots.
0:13:34 > 0:13:38- People who know them and - their friends treat them the same...
0:13:38 > 0:13:41- ..as they would their other friends.
0:13:41 > 0:13:46- Those who don't know them - would see the wheelchair first.
0:13:47 > 0:13:50- Everybody's treated the same here.
0:13:50 > 0:13:56- Amy Clair Davies is a friend - they met at the hospice.
0:13:56 > 0:13:59- She's a good laugh and pretty.
0:13:59 > 0:14:04- She goes nuts when people stare - at her. She knows how we feel.
0:14:04 > 0:14:08- It's hard when you have - a physical disability on its own...
0:14:09 > 0:14:13- ..because people automatically - assume you're thick...
0:14:13 > 0:14:16- ..or you don't understand - what's going on.
0:14:16 > 0:14:19- But once - you start talking to them...
0:14:19 > 0:14:23- ..that person's opinion - can get turned around...
0:14:23 > 0:14:26- ..because they realize - you have a sense of humour.
0:14:27 > 0:14:29- You can lighten the atmosphere.
0:14:29 > 0:14:32- For the twins, - it must be twice as hard...
0:14:32 > 0:14:37- ..because they've got the physical - impairment and they can't talk.
0:14:37 > 0:14:42- They're missing out on the physical - side of the relationship...
0:14:42 > 0:14:46- ..and missing out with a lot - of people on the emotional side...
0:14:46 > 0:14:48- ..on the social part.
0:14:48 > 0:14:53- I think the twins cope remarkably - well considering the situation.
0:14:53 > 0:14:57- They laugh and they smile - and they get on with it.
0:14:57 > 0:15:00- They do normal things.
0:15:01 > 0:15:05- You see through the cracks - when you're in a similar situation.
0:15:06 > 0:15:10- You see something happen - and you think...
0:15:11 > 0:15:17- ..that must be a really, - really shitty day or moment.
0:15:17 > 0:15:19- It must be really annoying.
0:15:19 > 0:15:21- Look at those smiles!
0:15:23 > 0:15:26- How long have you been sisters? - That's a tricky question!
0:15:26 > 0:15:28- You're 18 this year, are you?
0:15:29 > 0:15:31- Wow! Wish I was 18 again.
0:15:37 > 0:15:38- It's good, isn't it?
0:15:41 > 0:15:43- Do you feel the heat?
0:15:48 > 0:15:52- I'm having a spasm here. - I can't control them.
0:15:52 > 0:15:56- I shake and my muscles - sometimes lock in position.
0:16:03 > 0:16:07- Sometimes they hurt so much - I want to scream, but I can't.
0:16:18 > 0:16:20- Finished?
0:16:24 > 0:16:26- Hold my hand.
0:16:26 > 0:16:28- Do you feel alright now?
0:16:29 > 0:16:31- Are you sure?
0:16:32 > 0:16:36- Kirstie and Catherine - have more than 100 spasms a day.
0:16:36 > 0:16:41- Some are worse than others and - the girls have no control over them.
0:16:41 > 0:16:45- All they can do - is wait for the spasm to pass.
0:16:45 > 0:16:49- But the girls always deal with them - with a big smile.
0:16:50 > 0:16:53- If we feel emotional in any way, - happy or sad...
0:16:54 > 0:16:57- ..it makes our spasms worse.
0:16:57 > 0:17:00- We found ourselves - in a vicious circle.
0:17:00 > 0:17:05- Spasms make us upset - and getting upset makes us spasm.
0:17:08 > 0:17:13- I'm not going to have a hand left - if it gets any stronger.
0:17:16 > 0:17:20- When Catherine got upset, - I thought, what is going on here?
0:17:20 > 0:17:22- Something happens...
0:17:23 > 0:17:27- ..but perhaps sometimes - it's easier to say, "I'm fine"...
0:17:27 > 0:17:31- ..or, "I don't know why - I'm feeling this way."
0:17:31 > 0:17:35- Perhaps that's why - they go like that all the time.
0:17:36 > 0:17:38- It's an easy answer, isn't it?
0:17:38 > 0:17:40- Why were you crying?
0:17:43 > 0:17:45- You don't know?
0:17:45 > 0:17:48- Are you sure? Nothing's wrong?
0:17:49 > 0:17:54- You're not in pain? Nothing's - hurting you or upsetting you?
0:17:54 > 0:17:59- It's just come on like that, has it?
0:17:59 > 0:18:01- And you don't know why?
0:18:03 > 0:18:05- Are you alright now?
0:18:06 > 0:18:08- It's very important...
0:18:08 > 0:18:11- ..for them - to express their feelings.
0:18:11 > 0:18:15- If they can't talk about - what they're going through...
0:18:15 > 0:18:19- ..or if they can't talk about - the things that are worrying them...
0:18:19 > 0:18:21- ..it makes things worse.
0:18:23 > 0:18:25- You've got four hands.
0:18:28 > 0:18:31- This way, girls. Beautiful.
0:18:31 > 0:18:33- Perfect. Hold that there.
0:18:37 > 0:18:43- I feel devastated - about my condition.
0:18:47 > 0:18:52- What part of your condition - makes you feel so devastated?
0:18:52 > 0:18:54- SM.
0:18:55 > 0:18:56- Spasm.
0:18:56 > 0:18:59- Your spasms?
0:18:59 > 0:19:03- Do you think - it stops you doing things or...?
0:19:03 > 0:19:06- No? It just slows you down?
0:19:09 > 0:19:10- Don't sleep.
0:19:10 > 0:19:12- Don't sleep.- - It stops you sleeping?
0:19:13 > 0:19:15- Are your spasms - getting better or worse?
0:19:16 > 0:19:18- Same.
0:19:20 > 0:19:24- Is it the spasms that get you down - the most out of all your condition?
0:19:25 > 0:19:27- Worse than not being able to walk?
0:19:27 > 0:19:30- Worse than not being able to talk?
0:19:30 > 0:19:33- The spasms - are the worst thing for you?
0:19:33 > 0:19:37- Do you think you can talk - to your doctor about them next time?
0:19:38 > 0:19:39- No point.
0:19:39 > 0:19:41- No point.- - There's no point?
0:19:41 > 0:19:44- Do you think - she might not be able to help?
0:19:44 > 0:19:46- She might be able to help.
0:19:47 > 0:19:49- No? So what can we do - to help your spasms?
0:19:53 > 0:19:58- Don't know. Do you think there's - anything the doctors can do to help?
0:20:00 > 0:20:02- No.
0:20:02 > 0:20:05- Do they know your spasms - get you down, do you think?
0:20:06 > 0:20:08- Do you tell them?
0:20:17 > 0:20:19- Sometimes I think, why me?
0:20:20 > 0:20:23- It's so unfair - that it's happening to us.
0:20:25 > 0:20:30- I used to wish for a cure, - but I've given up hope.
0:20:30 > 0:20:33- If I could ask a god - what will happen...
0:20:33 > 0:20:36- ..I'd ask, "How bad will it get?"
0:20:38 > 0:20:43- We don't know, they don't know, - the doctors don't know.
0:20:43 > 0:20:48- But they're not stupid. - They know all about their condition.
0:20:48 > 0:20:51- We haven't talked - about things like...
0:20:53 > 0:20:57- We haven't talked about dying - and things like that.
0:20:57 > 0:21:02- I don't think it's the right time - to talk about things like that.
0:21:02 > 0:21:04- Since the filming...
0:21:04 > 0:21:08- ..I know the girls - have been saying things about it.
0:21:08 > 0:21:13- They're worried about discussing it - in case it upsets me...
0:21:14 > 0:21:18- ..and I'm afraid of mentioning it - in case I upset them.
0:21:18 > 0:21:21- I don't want to plant the seed - in their heads...
0:21:21 > 0:21:24- ..but it's already been planted.
0:21:24 > 0:21:26- We haven't been upset about it.
0:21:27 > 0:21:29- They've been great about it.
0:21:29 > 0:21:34- That shocked me because that shows - how grown up they actually are.
0:21:35 > 0:21:37- Hello, Kirst.
0:21:37 > 0:21:39- Where are you going?
0:21:39 > 0:21:42- Ysgol Gyfun Y Strade.
0:21:42 > 0:21:46- A lot of kids - were frightened of us in school...
0:21:46 > 0:21:51- ..because they didn't understand why - we're in wheelchairs and can't talk.
0:21:52 > 0:21:56- One day, we did a PowerPoint - presentation in assembly...
0:21:57 > 0:21:59- ..about our condition.
0:21:59 > 0:22:02- Since then, - everyone is so much nicer to us...
0:22:02 > 0:22:05- ..and aren't afraid to say hello.
0:22:05 > 0:22:09- We've learned from that - how important it is to talk.
0:22:10 > 0:22:13- This was the inspiration - for this film.
0:22:15 > 0:22:17- When I'm with the girls...
0:22:18 > 0:22:21- ..I just think they're incredible.
0:22:25 > 0:22:27- They always think of others.
0:22:28 > 0:22:31- They're so open and honest.
0:22:31 > 0:22:34- They never complain.
0:22:34 > 0:22:36- Perhaps Cath will cry.
0:22:36 > 0:22:41- I must say, she cries often, - but there's nothing wrong with that.
0:22:43 > 0:22:47- I just think they're lovely girls.
0:22:48 > 0:22:50- I enjoy spending time with them.
0:22:52 > 0:22:54- You just feel uplifted.
0:22:54 > 0:22:59- You forget about whatever's going on - around you when you're with them.
0:23:01 > 0:23:04- That's the way they make you feel.
0:23:04 > 0:23:04- .
0:23:09 > 0:23:09- Subtitles
0:23:09 > 0:23:11- Subtitles- - Subtitles
0:23:16 > 0:23:20- Today is Kirstie - and Catherine Fields' 18th birthday.
0:23:21 > 0:23:25- For the first time in their lives, - they can make their own decisions.
0:23:27 > 0:23:29- It's a bit scary, to be honest.
0:23:30 > 0:23:34- Since we were small, people - have always made decisions for us...
0:23:34 > 0:23:39- ..especially since we lost - the ability to talk.
0:23:41 > 0:23:43- Happy birthday, sweetheart.
0:23:45 > 0:23:46- Hello, Tad-cu.
0:23:46 > 0:23:48- Hello, Tad-cu.- - There's pretty you look.
0:23:49 > 0:23:51- Are you enjoying today?
0:23:51 > 0:23:54- Have a look what that is.
0:23:54 > 0:23:56- Oh, my God, what is it?
0:23:57 > 0:24:00- That wasn't my idea, - that was Mami's.
0:24:01 > 0:24:05- Just in case, Cath. You've always - got to be prepared now.
0:24:07 > 0:24:09- Do you know what it is, Kirst?
0:24:15 > 0:24:21- I think it's important - the girls have made this film...
0:24:21 > 0:24:25- ..because they want others - to see them as people...
0:24:25 > 0:24:28- ..instead of their disability.
0:24:28 > 0:24:32- If people took the time - to get to know them...
0:24:33 > 0:24:37- ..they would see - what loving, fun girls they are.
0:24:37 > 0:24:40- Those who don't know them - are missing out.
0:24:41 > 0:24:43- The people who know them well...
0:24:44 > 0:24:47- ..know that already.
0:24:47 > 0:24:50- # Happy birthday to you
0:24:51 > 0:24:54- # Happy birthday to you
0:24:54 > 0:25:00- # Happy birthday - to Catherine and Kirstie
0:25:00 > 0:25:03- # Happy birthday to you #
0:25:03 > 0:25:04- Hip hip!
0:25:04 > 0:25:06- Hip hip!- - Hooray!
0:25:06 > 0:25:07- Hip hip!
0:25:07 > 0:25:09- Hip hip!- - Hooray!
0:25:12 > 0:25:15- I always wanted a tattoo...
0:25:15 > 0:25:19- ..but Mami wouldn't let me - until I was 18.
0:25:19 > 0:25:21- The other day, I got one.
0:25:21 > 0:25:26- I got one too because I didn't want - to be different to Kirstie.
0:25:26 > 0:25:30- We both feel butterflies - help us forget our problems...
0:25:31 > 0:25:33- ..and relax, so that's what we got.
0:25:33 > 0:25:38- Really, I don't feel that different - to when I was 17!
0:25:38 > 0:25:40- I feel proud to be an adult...
0:25:40 > 0:25:43- ..and it's good to know - I can do what I want.
0:25:52 > 0:25:57- For years, the family has wanted - to throw an enormous party...
0:25:57 > 0:26:00- ..to celebrate - the girls becoming adults.
0:26:00 > 0:26:02- Tonight's the night.
0:26:03 > 0:26:05- One, two, three.
0:26:07 > 0:26:09- Whee! Hey!
0:26:19 > 0:26:21- Heavens above!
0:26:22 > 0:26:26- In the future, - the condition is going to get worse.
0:26:26 > 0:26:30- I do worry about it - but I try not to think about it.
0:26:32 > 0:26:35- Is it working?
0:26:38 > 0:26:42- No matter how hard it gets, - we love life...
0:26:42 > 0:26:46- ..and we are determined - to live it to the full.
0:26:46 > 0:26:50- We're getting on with our adult - life, whatever that may bring.
0:26:55 > 0:26:58- We're off down to Parc Y Scarlets...
0:26:58 > 0:27:01- ..for a night on the beer, - as you do, like, isn't it?
0:27:02 > 0:27:03- Good night!
0:27:09 > 0:27:11- So what does the future - hold for you?
0:27:12 > 0:27:14- What do you think?
0:27:14 > 0:27:16- Do you think about the future?
0:27:20 > 0:27:23- Carry on being happy.
0:27:23 > 0:27:24- Good on you, Cath.
0:27:24 > 0:27:27- What's your biggest hope - for the future?
0:27:28 > 0:27:29- What do you want to do?
0:27:30 > 0:27:32- I just think about my wedding.
0:27:32 > 0:27:34- I just think about my wedding.
0:27:36 > 0:27:38- You think about your wedding?
0:27:39 > 0:27:42- Is it important - that you are able to grow up...
0:27:42 > 0:27:44- ..and have a relationship?
0:27:45 > 0:27:48- Meet somebody - and take it from there?
0:27:53 > 0:27:58- Do you think you'll be able to have - that independence with your Fields?
0:28:01 > 0:28:04- No?
0:28:04 > 0:28:07- I want to.
0:28:07 > 0:28:11- Get married - and live with your husband?
0:28:12 > 0:28:14- I want to stay here.
0:28:15 > 0:28:17- You want to stay here...
0:28:17 > 0:28:19- ..living with Mam and Dad?
0:28:19 > 0:28:23- You don't want to live on your own? - With carers? No?
0:28:25 > 0:28:30- I thought you just said - you wanted to get married, though.
0:28:30 > 0:28:34- You do? So you want to get married - and live here with Mam and Dad?
0:28:34 > 0:28:37- Like The Waltons? OK.
0:28:37 > 0:28:39- Why is that, Cath?
0:28:39 > 0:28:40- I'm scared.
0:28:40 > 0:28:42- I'm scared.- - You're scared, Cath?
0:28:42 > 0:28:45- To move away from Mami and Dadi?
0:28:45 > 0:28:50- I think most 18-year-olds - would feel the same, wouldn't they?
0:29:01 > 0:29:05- The family has looked forward - to this evening for a long time.
0:29:06 > 0:29:08- A grand celebration with a band...
0:29:09 > 0:29:13- ..the girls in their party dresses - with friends and family close by.
0:29:13 > 0:29:16- It's going to be - the best celebration.
0:29:16 > 0:29:19- I'm a bit nervous too.
0:29:21 > 0:29:23- Turning 18 is cool.
0:29:24 > 0:29:27- We made a card each - to thank Mami and Dadi.
0:29:27 > 0:29:33- I wrote, 'Thanks for my party, - my presents and my cocktails.'
0:29:33 > 0:29:37- I also thanked Dad - for giving Mami his sperm...
0:29:37 > 0:29:40- ..for making me - so lush and gorgeous!
0:29:50 > 0:29:51- Happy birthday!
0:29:51 > 0:29:54- Happy birthday!- - It was great to celebrate.
0:29:54 > 0:29:57- At one point, - Hayley made us watch the big screen.
0:29:57 > 0:30:01- There were messages for us - from all sorts of famous people...
0:30:02 > 0:30:06- ..including Harry Styles - from One Direction.
0:30:07 > 0:30:10- Hi, Kirstie and Catherine. - We're One Direction.
0:30:10 > 0:30:14- We cannot wait to meet you at one - of our concerts. See you there.
0:30:15 > 0:30:16- My cousin was in bits.
0:30:17 > 0:30:19- SHE SHRIEKS HYSTERICALLY
0:30:26 > 0:30:28- # And I see your face
0:30:29 > 0:30:32- # There's not a thing - that I would... #
0:30:32 > 0:30:36- I think I will have a boyfriend - but it will be difficult.
0:30:37 > 0:30:41- The kind of man I'm into - is tall, fit and a nice guy.
0:30:41 > 0:30:44- And who knows...
0:30:45 > 0:30:48- ..one day - I might even get a bit of action!
0:30:51 > 0:30:54- So you're lying in bed, thinking, - I can't do this no more.
0:30:54 > 0:30:58- What makes you think - of smiling then?
0:30:58 > 0:31:01- H...
0:31:01 > 0:31:02- A...
0:31:03 > 0:31:08- ..R... R... Y...
0:31:10 > 0:31:12- Harry.
0:31:13 > 0:31:15- Harry Styles makes you smile?
0:31:16 > 0:31:19- When we're talking - and I'm spending time with you...
0:31:20 > 0:31:25- ..you have all the same kind - of thoughts and feelings...
0:31:25 > 0:31:28- ..as anybody else who's nearly 18.
0:31:28 > 0:31:30- Do you think that's true?
0:31:30 > 0:31:33- So do you think about boys?
0:31:33 > 0:31:35- SHE SQUEALS
0:31:36 > 0:31:39- Do you think about sex - and things like that?
0:31:41 > 0:31:44- No? Kirst, I know that's a lie.
0:31:44 > 0:31:46- How can you sit there and say no?
0:31:46 > 0:31:48- You are such a liar.
0:31:48 > 0:31:50- You don't, Cath?
0:31:50 > 0:31:55- You just want a relationship - based on friendship, do you? Yeah?
0:31:56 > 0:31:59- What about you, Kirst?
0:32:03 > 0:32:05- Be honest.
0:32:09 > 0:32:11- Sex.
0:32:11 > 0:32:14- You think about sex? Yeah.
0:32:14 > 0:32:16- It's normal for 18-year-olds.
0:32:16 > 0:32:19- That's the biggest thing - about being an adult.
0:32:19 > 0:32:21- You can do things like that.
0:32:22 > 0:32:25- Catherine's got her head - in her hands!
0:32:25 > 0:32:28- Oh, the shame! - My sister's talking about sex!
0:32:28 > 0:32:32- How do you feel, Kirst, - for you to have a relationship...
0:32:32 > 0:32:37- ..it'll be so much harder - and need a lot of understanding...
0:32:37 > 0:32:40- ..on yours - and the boy's part, really.
0:32:43 > 0:32:45- What do you think about that?
0:32:47 > 0:32:50- Do you think - it'll be worth all the hassle?
0:32:53 > 0:32:55- Yeah.
0:32:55 > 0:32:56- .
0:33:01 > 0:33:01- Subtitles
0:33:01 > 0:33:03- Subtitles- - Subtitles
0:33:10 > 0:33:12- For Lyn and Chris Fields...
0:33:12 > 0:33:17- ..parenting twins has brought them - double the fun and the affection.
0:33:17 > 0:33:21- But it has also meant - double the care and the anguish.
0:33:21 > 0:33:25- People think we're brave - going through so much...
0:33:25 > 0:33:27- ..and trying to smile.
0:33:27 > 0:33:30- I think Mami and Dadi - are the brave ones.
0:33:33 > 0:33:36- It's very hard - watching them go through it...
0:33:36 > 0:33:39- ..but they support each other.
0:33:39 > 0:33:45- If one of them was fit and the other - was disabled, it'd be harder...
0:33:45 > 0:33:50- ..because one would carry on with - her life and the other wouldn't.
0:33:51 > 0:33:53- They've been brave throughout.
0:33:54 > 0:33:56- It's difficult.
0:33:56 > 0:33:59- They just take everything - in their stride.
0:34:00 > 0:34:04- To begin with, how do you cope...
0:34:05 > 0:34:08- ..with not being able to walk?
0:34:08 > 0:34:10- Catherine has told me...
0:34:10 > 0:34:14- ..that she'd love - to be able to walk again.
0:34:15 > 0:34:18- She hates having to watch me - do everything.
0:34:19 > 0:34:23- She wants to help me, - but she can't move from her chair.
0:34:23 > 0:34:26- I have to help her with everything.
0:34:26 > 0:34:30- How do you cope - with losing your speech?
0:34:30 > 0:34:33- How do you cope with...?
0:34:33 > 0:34:39- They're gradually losing - all their abilities.
0:34:39 > 0:34:41- How do you cope with that?
0:34:41 > 0:34:43- But they're coping with it.
0:34:44 > 0:34:47- Why do you think Mami cries, Cath?
0:34:49 > 0:34:52- She doesn't like what is happening.
0:34:52 > 0:34:57- Mami cries because she doesn't like - what's happening... to you?
0:34:58 > 0:35:00- And she wishes - she could make it better?
0:35:08 > 0:35:10- UNINTELLIGIBLE MESSAGE
0:35:12 > 0:35:15- I'll have to read this, will I?
0:35:15 > 0:35:17- I didn't get much of that.
0:35:21 > 0:35:26- Be happy and smile - - life's too short not to be happy.
0:35:26 > 0:35:30- Is that your motto? Yeah?
0:35:32 > 0:35:34- Is it hard - to be happy all the time, Kirst?
0:35:36 > 0:35:39- Because you're always smiling.
0:35:41 > 0:35:46- I think sometimes people might look - and think, they're fine.
0:35:46 > 0:35:49- Life's OK for them - because they're always smiling.
0:35:50 > 0:35:52- Is that just a mask?
0:35:52 > 0:35:56- The discussion turned - to their recent deterioration...
0:35:57 > 0:35:59- ..and their feelings about death.
0:35:59 > 0:36:01- They didn't want it filmed...
0:36:02 > 0:36:05- ..but wanted Hayley - to explain their feelings.
0:36:05 > 0:36:10- We don't know for certain what - the future holds for the girls...
0:36:10 > 0:36:14- ..because they are the only ones - to have suffered with Fields.
0:36:14 > 0:36:20- But we think that things - will deteriorate further for them.
0:36:22 > 0:36:25- Their life expectancy may be short.
0:36:29 > 0:36:31- The girls are fully aware of that.
0:36:32 > 0:36:35- We've been very honest with them...
0:36:36 > 0:36:39- ..while I've been working with them.
0:36:40 > 0:36:42- Especially with Catherine...
0:36:42 > 0:36:46- ..since I've been working - one-to-one with her.
0:36:46 > 0:36:48- Cath mentioned...
0:36:49 > 0:36:54- ..that she's been - thinking a lot recently...
0:36:54 > 0:36:58- ..about the fact - she might die young.
0:36:58 > 0:37:04- She worries - whether it'll be painful for her.
0:37:04 > 0:37:06- She doesn't know what lies ahead.
0:37:07 > 0:37:09- She has asked things like...
0:37:09 > 0:37:14- .."Can I stay at home? - I don't want to go into hospital."
0:37:14 > 0:37:18- And she asked - what would happen to Kirstie.
0:37:18 > 0:37:21- It was difficult to answer.
0:37:21 > 0:37:24- You just think...
0:37:27 > 0:37:31- ..she's thinking of herself - and Kirstie too.
0:37:31 > 0:37:34- She said, "I don't want to be - the first to die...
0:37:35 > 0:37:38- "..because - I don't want to leave Kirstie.
0:37:38 > 0:37:44- "But then again, I don't want - Kirstie to die first either."
0:37:44 > 0:37:48- That's very difficult to hear.
0:37:51 > 0:37:54- I'm just pleased - she's able to talk about it...
0:37:54 > 0:37:58- ..and has the opportunity - to explain how she feels.
0:38:02 > 0:38:05- But it's difficult.
0:38:21 > 0:38:25- A charity has paid - for a family holiday to Disneyland.
0:38:30 > 0:38:32- Cinderella is my favourite.
0:38:33 > 0:38:35- I still watch the film now.
0:38:35 > 0:38:40- It reminds me of when I was small - before I had Fields Condition.
0:38:40 > 0:38:42- I've always liked Disney...
0:38:42 > 0:38:47- ..because there's always - a happy ending for the princesses.
0:38:53 > 0:38:56- Don't feel sorry for us.
0:38:56 > 0:38:58- No-one lives for ever.
0:38:58 > 0:39:00- Heaven is special.
0:39:01 > 0:39:04- I think when people go to heaven, - they are cured.
0:39:04 > 0:39:07- It's like Disneyland.
0:39:12 > 0:39:16- I believe in heaven - but I don't believe in God.
0:39:20 > 0:39:23- Why would he - make our lives hell like this?
0:39:30 > 0:39:32- People say we are brave.
0:39:32 > 0:39:35- That's because - we've got a spirit for life.
0:39:35 > 0:39:38- There are other people - worse off than us.
0:40:00 > 0:40:04- I feel very proud of the girls...
0:40:05 > 0:40:09- ..because of everything - they've been through.
0:40:09 > 0:40:15- They've been through - lots and lots of things...
0:40:15 > 0:40:18- ..but they just carry on regardless.
0:40:18 > 0:40:22- They worry - about what other people think...
0:40:22 > 0:40:26- ..more than what they - actually think themselves.
0:40:26 > 0:40:31- They worry more - about mine and Chris's feelings...
0:40:31 > 0:40:34- ..than they do about their own...
0:40:34 > 0:40:38- ..when it's them - who are actually going through it.
0:40:41 > 0:40:47- Two years ago, - Catherine started having spasms.
0:40:48 > 0:40:51- They took over her life.
0:40:51 > 0:40:56- They only started for Kirstie - last year.
0:40:56 > 0:40:59- Things don't happen to them - at the same time.
0:40:59 > 0:41:03- One has it and then - the other has it a few months later.
0:41:04 > 0:41:08- Catherine worries - more about Kirstie having them...
0:41:08 > 0:41:11- ..than she does about herself.
0:41:11 > 0:41:15- That goes to show - how strong they both are.
0:41:15 > 0:41:18- Everybody feels sorry for them...
0:41:18 > 0:41:22- ..because of everything - that's happening to them...
0:41:22 > 0:41:25- ..but they don't like that bit.
0:41:25 > 0:41:28- They like people to see them - for who they are...
0:41:28 > 0:41:31- ..rather than feeling sorry - for them.
0:41:33 > 0:41:37- They just want people - to be happy for them.
0:41:37 > 0:41:39- Having lost the ability to speak...
0:41:40 > 0:41:44- ..the speech aids have given - the girls a new lease of life.
0:41:44 > 0:41:46- But as their bodies weaken...
0:41:46 > 0:41:51- ..the fear is they will no longer - have the strength to use them.
0:41:51 > 0:41:55- Then the girls will lose - the ability to communicate for ever.
0:41:55 > 0:41:59- O-K. OK.
0:42:02 > 0:42:06- Do you worry about your sister, - Cath? Do you?
0:42:06 > 0:42:09- Do you worry about Catherine, Kirst?
0:42:10 > 0:42:12- Yeah?
0:42:12 > 0:42:15- Is it hard - to see each other go through it?
0:42:19 > 0:42:22- I love you.
0:42:22 > 0:42:25- Aw, Kirst!
0:42:35 > 0:42:39- Is it nice to use your voice - now and again when you can?
0:42:43 > 0:42:45- We talk with our eyes.
0:42:46 > 0:42:48- We talk...
0:42:48 > 0:42:50- ..through your eyes.
0:42:51 > 0:42:53- To each other?
0:42:53 > 0:42:58- You know what each other's thinking - by looking at each other's eyes?
0:42:58 > 0:43:02- Can you understand when Catherine's - sad even if she doesn't say?
0:43:03 > 0:43:08- Can you understand when she's upset? - Can she understand you?
0:43:08 > 0:43:12- How do you think Cath's doing today? - Is she alright?
0:43:14 > 0:43:17- Is she happy?
0:43:22 > 0:43:24- Are you upset?
0:43:24 > 0:43:27- No? Is it a spasm?
0:43:28 > 0:43:31- Are you alright? Are you sure?
0:43:39 > 0:43:41- I know it's hard but keep smiling.
0:43:41 > 0:43:45- I know it's hard but keep smiling.
0:44:04 > 0:44:06- Don't feel sorry for us.
0:44:06 > 0:44:09- Life is too short - to spend time feeling blue.
0:44:09 > 0:44:14- Have some fun. - Do something crazy once in a while.
0:44:14 > 0:44:16- Laugh. Love. Live.
0:44:16 > 0:44:19- And always wear a smile.
0:44:54 > 0:44:56- S4C Subtitles by Adnod Cyf.
0:44:57 > 0:44:57- .