Episode 1 Beautiful Lives


Episode 1

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Transcript


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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.

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Is that what you plan to do?

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What's your biggest hope?

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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,

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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

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0:38:580:39:02

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