Episode 1 Beautiful Lives


Episode 1

Following Llanelli twins Catherine and Kirstie Fields, the only people in the world afflicted with Fields Condition, as they prepare for their 18th birthday.


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Transcript


LineFromTo

Hi, I'm Kirstie.

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And I'm Catherine. People know us as the Fields Twins.

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We suffer from a unique neurological condition

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that's slowly taking away all our muscle control.

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We both suffer painful spasms.

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We are the only people in the world who have this illness,

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and so the doctors have named it after us, Fields condition.

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We're not expected to live very long.

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No-one knows for sure what's ahead of us,

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but the doctors have no cure, and we've started going to a hospice.

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We've lost our mobility, and a few years ago we lost our voices.

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This year, as we turn 18, we wanted to make this film together

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to share our thoughts on our world, while we still can.

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Our lives can be really scary but we have not lost heart.

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We try to face the world with a smile.

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This is our story.

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In our own words.

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These are our new super powerful speech aids. They're amazing.

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Through these we're able to express our thoughts

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and talk to people again.

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I'm Kirstie. As you can hear, I've chosen an Australian accent.

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I'm Catherine, and I've gone for posh one!

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Today, we're having a lesson on how to use the speech aids.

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Already, I can say things I've wanted to say for a long time!

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Mam, do you and Daddy have sex?

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SHE GIGGLES

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-Kirst!

-That's personal.

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THEY LAUGH

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I love winding Mammy up.

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Kirstie is so cheeky. What she says is always so embarrassing.

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But I love her to bits.

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The nice thing is now, when they do talk,

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when they do say it with their communication aid,

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you've actually got a voice at the end of it.

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Even though it's not the girls' voices.

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SHE SPEAKS WELSH

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Welsh is our first language

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and we think everybody in Wales should speak it.

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But to be honest, I'm just happy to be able to speak at all.

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You'd think now, looking back at things like home videos and stuff,

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where they're singing and laughing and talking,

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you think that they'd upset about something like that,

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but they actually like watching them.

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They don't get upset about them.

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They get more embarrassed than upset.

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Hello. This is a present for Kirstie.

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I hope she likes it and I think it's the same as your present.

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We remember loads about life before we got ill.

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I really like watching old home videos. It's a laugh.

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It's Christmas morning...

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Merry Christmas!

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It's Christmas morning and we're really looking forward

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to seeing what's in our sack.

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Merry Christmas and a Happy New Year!

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I enjoy the memories,

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but it makes me sad to think I can't do those things any more.

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We were typical little girls, into singing and dancing,

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and we loved spending time with our friends.

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THEY ALL SING

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Slowly, around four, things started to change.

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We noticed that we were getting a little bit clumsy.

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We thought nothing of it to begin with,

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but soon Mam and Dad were worried,

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so we went for hospital tests, they drew a blank.

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Living with Field's condition is really difficult

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and it's getting worse.

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It sucks.

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For the past few years,

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we have been coming to a children's hospice called Ty Hafan.

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-Hello!

-Hello.

-Expert driving there, who's the expert?

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Are you OK?

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People who come here aren't expected to live beyond 19.

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I know that's a really scary thought,

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but Ty Hafan isn't a scary place.

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We love it here.

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They look after us in so many different ways.

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This is Hayley Mason, she is one of the family support staff

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and helps us so much, both at home and in the hospice.

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Hayley is nutty, kind and a beautiful person. We love her.

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THE PAINT SQUELCHES

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That is not me.

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Excuse you!

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It's really difficult to communicate with the girls.

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You can do it on a simple level because you can ask them

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simple questions and they can answer yes or no.

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But actually, to get anything of a deeper level,

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talking about their feelings or emotions or what's worrying them,

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what's stressing them, then it's actually quite difficult

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because they don't have their voice so they can't answer straightaway.

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I think you have to have a lot of patience

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and take your time with the girls.

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It's important for us to hear what they've got to say.

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You could quite easily forget that, if you thought to yourself,

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"Oh, I can't be bothered to get the communication aid"

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or "We'll have to wait now."

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You have to have a lot of patience and time with them,

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because it's really important

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that they get to express how they're feeling.

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We used to talk at night and put the world to rights.

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Kirstie is the noisy one, and she would jabber on all night.

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We talked a lot of crap. I miss those chats.

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Now we have to lie there next to each other in silence.

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It sucks.

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Using our new speech aids to talk to someone has opened up

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a whole new world for us.

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We hope that listening to these conversations

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will give you a better understanding of our lives.

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The only one who knows what you're going through is Catherine.

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And the only one who knows what you're going through is Kirstie.

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And yet you can't speak about it.

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That's pretty pants really, isn't it?

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It's pretty pants.

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Miss it.

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You miss being able to have a good chat with your sister?

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I bet you do, sweetheart.

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How hard it is. How hard it is.

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Is that something you think about every day, Cath?

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Yeah.

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Would it help if you could talk to your sister a bit more about it?

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Maybe that's something we can do together, the three of us.

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Yeah, that'd be good, wouldn't it?

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If when I meet you, we could have some time together, the three of us.

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Yeah?

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Then you can just have time with each other

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to talk about different things.

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Yeah?

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-Come on, then!

-BOTH: Wey-hey!

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We live in Llanelli with our parents, Kris and Lyn.

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Daddy is sarcastic, grumpy and he swears a lot,

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but he's got a wicked sense of humour.

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Mammy is funny and lovable.

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She looks after us and she thinks about everyone.

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They both have hearts of gold.

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The girls are staying at Ty Hafan this week,

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and they're having a pampering day today.

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They've had their hair done, they've had their make-up done

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and they are just loving it. They're really lapping it up, they are.

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One of the best things about Ty Hafan is that we get treated normally.

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Some people tend to treat us like babies.

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Just because I can't talk they patronise me

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and treat me like I'm stupid.

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They make me angry too.

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I know they're trying to be nice but they are just being idiots.

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It can take me all day to get them ready, you know, make-up, hair.

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For them to come here and do it here, it's just nice,

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it's just something that a normal 17-year-old girl would do anyway.

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'Amy-Claire is our friend who we met at the hospice.

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'She's a good laugh and pretty.

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'She goes nuts when people stare at her.

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'She knows how we feel.'

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'I think it's hard when you have a physical disability on its own'

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because people automatically assume

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you're thick or you don't understand what's going on,

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but once you start talking to them,

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that person's opinion can get turned around

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because they realise you have a sense of humour,

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'you can make a joke about it and lighten the atmosphere,

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'but I think for the twins, it must be twice as hard

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'because they've not just got the physical impairment,

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'they can't talk to someone, so not only are they missing out

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'on the physical side of the relationship

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'but they're missing out with a lot of people on the emotional side,

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on the social part.

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I think the twins cope remarkably well,

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considering the situation.

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They laugh and they smile and they get on with it,

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they do normal things.

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But it's like you see through the cracks,

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I think, especially when you're in a similar situation.

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You see something happen and you think,

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"That must be a really, really shitty day or moment.

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"It must be really annoying."

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Look at those smiles! Oh!

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How long have you been sisters? That's a tricky question!

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Is it 18 you are this year, are you?

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Wow! I wish I was 18 again.

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LAUGHTER

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CHAT ECHOES DISTANTLY

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I'm having a spasm here.

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I can't control them.

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I shake, and my muscles sometimes lock in position.

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Sometimes they hurt so much I want to scream, but I can't.

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We both suffer from bad spasms.

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We have small ones every few minutes,

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around 100 a day.

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If we feel emotional in any way,

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happy or sad,

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it makes our spasms worse.

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We've found ourselves in a vicious circle where spasms make us upset,

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and getting upset makes us spasm.

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I'm not going to have an hand left if it gets any stronger!

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'Catherine has been fab for most of the day. She really enjoyed it,

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'but she's been a bit overwhelmed at times, I think,

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'and she's had a couple of tearful moments'

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where she's had to just have a little bit of time out

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just to chill a little bit and think about things

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'and it's certainly hard for us

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'to get to the bottom of why she feels overwhelmed.

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'Sometimes she says she doesn't even know why she feels overwhelmed

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'or cries, it just comes over her like a wave I guess, at times,

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'and it's difficult for her,

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'like I say, especially because she hasn't got the use of her voice.'

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Because she's been bad,

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she's been having spasms for the last two years,

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she's been with me a lot and she's very, very clingy to me.

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What Catherine finds hard more than Kirstie, Catherine is a worrier

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but Kirstie lets it all go over her head -

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she doesn't worry about anything until it actually happens.

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Catherine is finding it harder to deal with the fact she is disabled.

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She wants to be like her friends.

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We've got four hands.

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This way, girls.

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Beautiful. Perfect. Hold that there.

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I...

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T...

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Feel devastated about my condition.

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What part of your condition makes you feel so devastated?

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S...

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M...

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Spasm.

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Your spasms?

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That's a big, bold statement to make. Does it get you down?

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-Don't sleep.

-It stops you sleeping?

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Do think your spasms are getting better or worse?

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-Same.

-So they're the same?

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Is it the spasms that get you down the most out of all your condition?

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Yeah. Worse than not being able to walk?

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Worse than not being able to talk?

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The spasms are the worst thing for you?

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Do you think you can talk to your doctor about it

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when you go to see your doctor next?

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No point.

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There's no point? Do you think she might not be able to help?

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She might be able to help. What do you think?

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No?

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So what can we do to help your spasms?

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Don't know.

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Do you think there's anything that the doctors can do to help?

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No?

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Do they know that your spasms get you down, do you think?

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Yeah, do you tell them?

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Mm-hm.

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Sometimes I think, "Why me?"

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It's so unfair that it's happening to us.

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I used to wish for a cure, but I've given up hope.

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If I could ask a God what will happen,

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I'd ask, "How bad will it get?"

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I took them to school today. They should be in school by lunchtime

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because they had a photo taken of all Year 13.

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That was very emotional, seeing them all...

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You know, they're all together now

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and they're all going to be together in their prom

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and after then, they'll all go their separate ways, won't they?

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And...

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It was emotional to think, you know,

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they should be doing the same as what everybody else is doing.

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I can't do this today.

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Ysgol Gyfun y Strade.

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A lot of kids were frightened of us in school

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because they didn't understand why we are in wheelchairs and cannot talk.

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One day, we did a PowerPoint presentation

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in assembly about our condition.

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Since then, everyone is so much nicer to us and aren't afraid to say hello.

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We've learnt from that how important it is to talk.

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This was the inspiration for this film.

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The only way you could describe the atmosphere

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when you're with the girls is nuts.

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They are just... You can be in tears one minute with them,

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you know, talking about really difficult issues,

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and the next minute, Kirstie will say something totally off the wall,

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totally not related whatsoever, and have you all in stitches

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or a nice boy can walk past

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and they are both just turn their heads like that.

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You think, "Hang on, are we talking about something serious?"

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They've obviously been distracted

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but they don't... Though things are really difficult for the girls,

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they don't tend to live their days dwelling on that,

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they kind of try and put a smile on each morning

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and have as much fun as they can through the day

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and they're very conscious of everybody else around them,

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they want to look after Mam and Dad

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and the staff at school and all the staff at Ty Hafan,

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they want to make sure that they enjoy their company as well

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and that they're OK. They're very caring girls.

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They want to make sure that everybody's happy

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and is having a nice time, but they're just nuts.

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Absolutely nuts.

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We turn 18 today.

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Now that we're adults, we can make our own decisions about our lives.

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It's a bit scary, to be honest.

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Since we were small, people have always made decisions for us,

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especially since we lost the ability to talk.

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SHE LAUGHS

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Oh, my God, what is it?

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That was my idea, that was.

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Just in case, Cath, just in case.

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You've always got to be prepared now.

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Do you know what it is, Kirst?

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THEY ALL LAUGH

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There's time to get the habit.

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'This time last year,'

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all I said was that I hoped the girls would be strong enough

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to actually enjoy their party

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and back in January, they had feeding PEGs put in their stomachs

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and they've actually put some weight on,

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where they're stronger and they can actually...

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Even though they're tired today,

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they're coping with everything better,

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'so I didn't think they'd be as good now as what they actually are.'

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'Um...'

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'You know, obviously I don't know what's going to...

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'I haven't thought about what's going to happen after now

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'because we've only aimed as far as their 18th birthday,

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'you know, we haven't... Well, I haven't looked too far ahead

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'from their 18th birthday.'

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-ALL:

-# Penblwydd hapus i chi

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# Penblwydd hapus i chi

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# Penblwydd hapus i Catherine a Kirstie

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# Penblwydd hapus i chi! #

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-Hip-hip!

-Hurray!

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-Hip-hip!

-Hurray!

-Hip-hip!

-Hurray!

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PEN BUZZES

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I always wanted a tattoo but Mammy wouldn't let me until I was 18.

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The other day, I got one.

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I got one too because I didn't want to be different to Kirstie.

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We both feel butterflies help us forget our problems and relax,

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so that's what we got.

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Really, I don't feel that different to when I was 17.

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I feel proud to be an adult

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and it's good to know I can do what I want.

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For years, we've planned a big ball

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to celebrate reaching adulthood

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and tonight, it's finally happening.

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One, two, three...

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Hey!

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SHE MUMBLES

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O, bois bach.

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In the future, the condition is going to get worse.

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I do worry about it, but I try not to think about it.

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Gweithio?

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No matter how hard it gets, we love life

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and we're determined to live it to the full.

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We're getting on with our adult life, whatever that may bring.

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We're off to the Parc y Scarlets at the moment

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for a night on the cwrw, as you do, like. Isn't it?

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Good night.

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Carry on being happy.

0:24:060:24:09

Is that what you plan to do?

0:24:090:24:12

What's your biggest hope?

0:24:130:24:15

I will think about my wedding. I will think about my wedding.

0:24:180:24:25

You'll think about your wedding?

0:24:250:24:27

Is it important that you are able to grow up

0:24:270:24:30

and have a bit of independence? You can have a relationship

0:24:300:24:34

and meet somebody and take it from there?

0:24:340:24:37

Do you think you'd be able to have that independence, with your Fields?

0:24:420:24:47

Will you be able to?

0:24:470:24:50

No?

0:24:500:24:52

-I want to.

-You want to?

0:24:530:24:56

What, get married and live with a husband?

0:24:560:25:00

I want to stay here.

0:25:020:25:04

You want to stay here?

0:25:040:25:06

Live with your mam and dad?

0:25:060:25:08

You don't want to live on your own? With carers? No?

0:25:080:25:12

I thought you just said you wanted to get married, though, Cath.

0:25:140:25:18

Like the Waltons? OK.

0:25:230:25:26

Why is that, Cath?

0:25:260:25:28

I'm scared.

0:25:280:25:29

You're scared, Cath? What, to move away from Mammy and Daddy?

0:25:290:25:33

I think most 18-year-olds would feel the same, Cath, wouldn't they?

0:25:330:25:38

I've been looking forward to tonight for ages.

0:25:500:25:54

We are dressing up in our princess frocks.

0:25:540:25:57

There's going to be a band, all our family and friends,

0:25:570:26:02

and it's going to be the best celebration.

0:26:020:26:04

I'm a bit nervous too.

0:26:040:26:06

Turning 18 is cool.

0:26:100:26:12

We made a card each to thank Mammy and Daddy.

0:26:120:26:16

I wrote, "Thanks for my party,

0:26:160:26:18

"my presents and my cocktails."

0:26:180:26:22

I also thanked Dad for giving Mammy his sperm,

0:26:230:26:26

making me so lush and gorgeous!

0:26:260:26:29

THEY ALL SHOUT AT ONCE

0:26:290:26:32

Ready when you please!

0:26:330:26:36

Happy birthday!

0:26:390:26:41

It was great to celebrate.

0:26:410:26:44

At one point, Hayley made us watch the big screen.

0:26:440:26:48

There were messages for us from all sorts of famous people

0:26:480:26:53

including Harry Styles from One Direction.

0:26:530:26:55

Hi, Kirstie and Catherine. We're One Direction

0:26:550:26:58

and we just want to say we cannot wait to meet you

0:26:580:27:00

at one of our concerts next year.

0:27:000:27:02

-We'll see you there.

-See you soon!

-Bye!

0:27:020:27:04

My cousin was in bits!

0:27:040:27:05

SHE SCREAMS

0:27:050:27:08

MUSIC: "Just The Way You Are" by Bruno Mars

0:27:140:27:20

I think I will have a boyfriend, but it will be difficult.

0:27:220:27:25

The kind of man I'm into is tall, fit and a nice guy

0:27:250:27:31

but who knows? One day I might even get a bit of action.

0:27:310:27:37

So your laying in bed of a morning, thinking, "I can't do this no more."

0:27:390:27:43

What makes you think of smiling then?

0:27:430:27:47

H...

0:27:480:27:50

A...

0:27:500:27:52

R...

0:27:520:27:54

R...

0:27:540:27:56

Y.

0:27:560:27:57

Harry.

0:27:580:28:00

HAYLEY LAUGHS

0:28:000:28:01

Harry Styles makes you smile?

0:28:010:28:05

You know, sometimes when we talk and I'm spending time with you

0:28:050:28:08

I think you have all the same kind of thoughts and feelings

0:28:080:28:14

as anybody else who's nearly 18. You think that's true?

0:28:140:28:19

So do you think about boys?

0:28:190:28:22

Yeah?

0:28:230:28:25

Do you think about sex and things like that?

0:28:250:28:28

No? You see, I know that's a lie.

0:28:300:28:33

How can you sit there and say no?

0:28:330:28:35

You are such a liar!

0:28:350:28:37

You don't, Cath?

0:28:370:28:39

No, you just want more of a relationship

0:28:390:28:41

that's based on friendship, do you?

0:28:410:28:44

Yeah? What about you, Kirst?

0:28:440:28:48

Be honest!

0:28:520:28:53

Sex.

0:28:580:29:00

You think about sex? Yeah?

0:29:000:29:02

It's quite normal, though, isn't it, for girls who are nearly 18?

0:29:020:29:05

I think that's the biggest thing about being an adult,

0:29:050:29:08

you can do things like that, isn't it?

0:29:080:29:11

Catherine's got her head in her hands!

0:29:110:29:14

"Oh, the shame! My sister's talking about sex!"

0:29:140:29:18

How do you feel, Kirst, about the fact that

0:29:180:29:21

for you to have a relationship, it'll be so much harder

0:29:210:29:24

and need a lot of understanding on yours

0:29:240:29:28

and the boy's part, really, wouldn't it?

0:29:280:29:31

What do you think about that?

0:29:310:29:34

Do you think it's worth a try? Think it'll be worth all the hassle?

0:29:360:29:42

Yeah.

0:29:420:29:43

I feel so lucky.

0:29:470:29:49

We have such caring parents.

0:29:490:29:52

They do everything for us.

0:29:520:29:54

People think we're brave, going through so much and trying to smile.

0:29:540:30:00

I think Mammy and Daddy are the brave ones.

0:30:000:30:04

I really don't know what kind of a life they're going to have from now on.

0:30:040:30:08

Um...

0:30:080:30:11

I can see...

0:30:110:30:14

how the problems that they've got,

0:30:140:30:18

how those problems, these new little problems starting,

0:30:180:30:22

and this is what their condition has been all along from day one.

0:30:220:30:26

When it first started, you see little bits of things.

0:30:260:30:31

And, all of a sudden, it's worse and it's there all the time.

0:30:310:30:35

Deep down, I know...

0:30:350:30:37

I know that...

0:30:370:30:40

these little problems are going to go worse.

0:30:400:30:42

And they're going to cause big problems, you know.

0:30:420:30:46

Does that make sense?

0:30:460:30:48

Will, you know, will they always be cared for so much

0:30:500:30:53

-that they'll always be children?

-Yeah.

0:30:530:30:55

Will they ever have that kind of independence to be an adult?

0:30:550:30:58

Can you kind of...?

0:30:580:31:00

SHE SIGHS

0:31:040:31:07

No, I can't.

0:31:070:31:09

Why do you think Mammy cries, Cath?

0:31:200:31:22

She doesn't like what is happening.

0:31:240:31:27

Mammy cries cos she doesn't like what's happening to you.

0:31:270:31:33

And she wishes she could make it better.

0:31:330:31:36

SPEECH IS UNCLEAR

0:31:420:31:44

I'll have to read this, I didn't get much of that.

0:31:480:31:51

Ah... "Be happy and smile, life is too short not to be happy."

0:31:530:31:58

Yeah? Is that your motto?

0:31:590:32:02

Yeah?

0:32:020:32:04

Is it hard to be happy all the time like this?

0:32:040:32:07

Mmm.

0:32:080:32:10

Cos you're always smiling.

0:32:100:32:12

I think, sometimes, people might look and think,

0:32:140:32:16

"Oh, they're fine, life's OK for them, cos they're always smiling."

0:32:160:32:21

Is that just a mask?

0:32:220:32:24

Yeah.

0:32:250:32:26

A smile gets you through.

0:32:260:32:29

A smile gets you through.

0:32:290:32:31

It does, doesn't it?

0:32:350:32:36

You know, when you think about the girls and what they live with each day

0:32:380:32:41

and how much each day is a struggle,

0:32:410:32:46

you kind of appreciate

0:32:460:32:49

how they want to try and be happy and live life as full as they can...

0:32:490:32:56

..because they know that each day can bring a new problem for them,

0:32:570:33:02

and they know that the future is really uncertain.

0:33:020:33:06

I was talking to Cath last week

0:33:060:33:09

and she said that she's been thinking a lot about... about dying recently.

0:33:090:33:15

And she was asking questions around that

0:33:150:33:19

and speaking about her fears and...

0:33:190:33:22

..and what that might be for her.

0:33:240:33:26

And she was talking about things like,

0:33:260:33:28

"Will I be in a lot of pain?

0:33:280:33:30

"Who will help me? Who will support me?"

0:33:300:33:33

And, at the same time,

0:33:330:33:36

what was heartbreaking to hear, but a lovely thought,

0:33:360:33:39

she was asking questions about her sister, so she was saying,

0:33:390:33:42

"But what will happen to Kirstie?

0:33:420:33:44

"If I die, who will help Kirstie? Who will be with Kirstie?"

0:33:440:33:49

And I just thought, for an 18-year-old to have to think,

0:33:490:33:51

not only about your own death,

0:33:510:33:53

but about your twin sister's as well.

0:33:530:33:55

It shouldn't have to be, should it?

0:33:570:33:59

It shouldn't have to be.

0:33:590:34:01

A charity has given us a special holiday to Disneyland.

0:34:190:34:24

Cinderella is my favourite.

0:34:280:34:31

I still watch the film now.

0:34:310:34:33

It reminds me of when I was small, before I had Fields condition.

0:34:330:34:37

I've always liked Disney

0:34:400:34:42

because there's always a happy ending for the princesses.

0:34:420:34:46

Don't feel sorry for us.

0:34:500:34:53

No-one lives for ever.

0:34:530:34:56

Heaven is special.

0:34:560:34:58

I think when people go to heaven they are cured.

0:34:580:35:01

It's like Disneyland.

0:35:010:35:03

I believe in heaven, but I don't believe in God.

0:35:110:35:14

Why would he make our lives hell like this?

0:35:180:35:21

People say we're brave.

0:35:280:35:30

I just think that's because we've got a spirit for life.

0:35:300:35:34

There are other people worse off than us.

0:35:340:35:37

O...K.

0:36:040:36:07

OK.

0:36:070:36:08

Do you worry about your sister, Cath?

0:36:120:36:15

Do you? Do you worry about Catherine, Kirst?

0:36:150:36:17

Yeah.

0:36:190:36:21

Is it hard to see each other go through it?

0:36:210:36:24

I love you.

0:36:280:36:30

Aw-w, Kirst.

0:36:320:36:35

SHE PANTS

0:36:370:36:40

Is it nice to use your voice now and again, Kirst, when you can?

0:36:450:36:48

We talk with our eyes.

0:36:500:36:53

You talk through your eyes...

0:36:540:36:57

Ah! ..to each other?

0:36:570:37:00

So you know what each other is thinking,

0:37:000:37:03

just by looking at each other's eyes?

0:37:030:37:06

Can you understand when Catherine is said even if she doesn't say it?

0:37:060:37:10

Can you understand when she's upset even if she doesn't say it?

0:37:100:37:13

Can she understand you?

0:37:130:37:15

Mmm.

0:37:150:37:16

How do you think she's doing today, Cath? Is she all right?

0:37:160:37:20

Yeah?

0:37:200:37:21

Is she happy?

0:37:210:37:23

I know it's hard, but keep smiling. I know it's hard, but keep smiling.

0:37:470:37:53

Don't feel sorry for us.

0:38:120:38:14

Life is too short to spend time feeling blue.

0:38:140:38:18

Have some fun, do something crazy once in a while.

0:38:180:38:22

Love, laugh, live...

0:38:220:38:24

And always wear a smile.

0:38:240:38:27

Subtitles by Red Bee Media Ltd

0:38:580:39:02

The remarkable story of twin girls from Llanelli whose unique illness has gradually confined them to wheelchairs and made speech impossible. Catherine and Kirstie Fields are the only people in the world with the illness that bears their name - Fields Condition. This powerful and uplifting film - narrated by Kirstie and Catherine through their voice simulators - is a moving portrait of the lives of two incredible teenagers as they approach their 18th birthday.


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