0:00:15 > 0:00:17Hi, I'm Kirstie.
0:00:17 > 0:00:21And I'm Catherine. People know us as the Fields Twins.
0:00:24 > 0:00:27We suffer from a unique neurological condition
0:00:27 > 0:00:31that's slowly taking away all our muscle control.
0:00:31 > 0:00:34We both suffer painful spasms.
0:00:34 > 0:00:38We are the only people in the world who have this illness,
0:00:38 > 0:00:43and so the doctors have named it after us, Fields condition.
0:00:47 > 0:00:50We're not expected to live very long.
0:00:50 > 0:00:53No-one knows for sure what's ahead of us,
0:00:53 > 0:00:57but the doctors have no cure, and we've started going to a hospice.
0:01:04 > 0:01:09We've lost our mobility, and a few years ago we lost our voices.
0:01:09 > 0:01:13This year, as we turn 18, we wanted to make this film together
0:01:13 > 0:01:19to share our thoughts on our world, while we still can.
0:01:19 > 0:01:23Our lives can be really scary but we have not lost heart.
0:01:23 > 0:01:27We try to face the world with a smile.
0:01:32 > 0:01:34This is our story.
0:01:34 > 0:01:36In our own words.
0:01:51 > 0:01:57These are our new super powerful speech aids. They're amazing.
0:01:57 > 0:02:00Through these we're able to express our thoughts
0:02:00 > 0:02:03and talk to people again.
0:02:07 > 0:02:11I'm Kirstie. As you can hear, I've chosen an Australian accent.
0:02:11 > 0:02:16I'm Catherine, and I've gone for posh one!
0:02:18 > 0:02:22Today, we're having a lesson on how to use the speech aids.
0:02:24 > 0:02:28Already, I can say things I've wanted to say for a long time!
0:02:34 > 0:02:38Mam, do you and Daddy have sex?
0:02:38 > 0:02:40SHE GIGGLES
0:02:40 > 0:02:42- Kirst!- That's personal.
0:02:42 > 0:02:44THEY LAUGH
0:02:44 > 0:02:47I love winding Mammy up.
0:02:47 > 0:02:52Kirstie is so cheeky. What she says is always so embarrassing.
0:02:54 > 0:02:56But I love her to bits.
0:02:58 > 0:03:04The nice thing is now, when they do talk,
0:03:04 > 0:03:07when they do say it with their communication aid,
0:03:07 > 0:03:10you've actually got a voice at the end of it.
0:03:10 > 0:03:14Even though it's not the girls' voices.
0:03:14 > 0:03:15SHE SPEAKS WELSH
0:03:17 > 0:03:19Welsh is our first language
0:03:19 > 0:03:23and we think everybody in Wales should speak it.
0:03:30 > 0:03:35But to be honest, I'm just happy to be able to speak at all.
0:03:35 > 0:03:40You'd think now, looking back at things like home videos and stuff,
0:03:40 > 0:03:46where they're singing and laughing and talking,
0:03:46 > 0:03:49you think that they'd upset about something like that,
0:03:49 > 0:03:51but they actually like watching them.
0:03:51 > 0:03:53They don't get upset about them.
0:03:53 > 0:03:56They get more embarrassed than upset.
0:03:56 > 0:04:01Hello. This is a present for Kirstie.
0:04:01 > 0:04:06I hope she likes it and I think it's the same as your present.
0:04:06 > 0:04:10We remember loads about life before we got ill.
0:04:10 > 0:04:15I really like watching old home videos. It's a laugh.
0:04:15 > 0:04:17It's Christmas morning...
0:04:17 > 0:04:19Merry Christmas!
0:04:19 > 0:04:24It's Christmas morning and we're really looking forward
0:04:24 > 0:04:28to seeing what's in our sack.
0:04:28 > 0:04:33Merry Christmas and a Happy New Year!
0:04:33 > 0:04:36I enjoy the memories,
0:04:36 > 0:04:40but it makes me sad to think I can't do those things any more.
0:04:41 > 0:04:46We were typical little girls, into singing and dancing,
0:04:46 > 0:04:48and we loved spending time with our friends.
0:04:48 > 0:04:50THEY ALL SING
0:04:55 > 0:04:59Slowly, around four, things started to change.
0:04:59 > 0:05:03We noticed that we were getting a little bit clumsy.
0:05:03 > 0:05:05We thought nothing of it to begin with,
0:05:05 > 0:05:07but soon Mam and Dad were worried,
0:05:07 > 0:05:13so we went for hospital tests, they drew a blank.
0:05:13 > 0:05:16Living with Field's condition is really difficult
0:05:16 > 0:05:18and it's getting worse.
0:05:18 > 0:05:20It sucks.
0:05:23 > 0:05:24For the past few years,
0:05:24 > 0:05:29we have been coming to a children's hospice called Ty Hafan.
0:05:29 > 0:05:35- Hello!- Hello.- Expert driving there, who's the expert?
0:05:35 > 0:05:36Are you OK?
0:05:38 > 0:05:43People who come here aren't expected to live beyond 19.
0:05:43 > 0:05:45I know that's a really scary thought,
0:05:45 > 0:05:48but Ty Hafan isn't a scary place.
0:05:48 > 0:05:50We love it here.
0:05:50 > 0:05:53They look after us in so many different ways.
0:05:53 > 0:05:58This is Hayley Mason, she is one of the family support staff
0:05:58 > 0:06:02and helps us so much, both at home and in the hospice.
0:06:02 > 0:06:07Hayley is nutty, kind and a beautiful person. We love her.
0:06:07 > 0:06:08THE PAINT SQUELCHES
0:06:08 > 0:06:11That is not me.
0:06:11 > 0:06:12Excuse you!
0:06:13 > 0:06:16It's really difficult to communicate with the girls.
0:06:16 > 0:06:19You can do it on a simple level because you can ask them
0:06:19 > 0:06:22simple questions and they can answer yes or no.
0:06:22 > 0:06:26But actually, to get anything of a deeper level,
0:06:26 > 0:06:29talking about their feelings or emotions or what's worrying them,
0:06:29 > 0:06:33what's stressing them, then it's actually quite difficult
0:06:33 > 0:06:38because they don't have their voice so they can't answer straightaway.
0:06:38 > 0:06:40I think you have to have a lot of patience
0:06:40 > 0:06:41and take your time with the girls.
0:06:41 > 0:06:45It's important for us to hear what they've got to say.
0:06:45 > 0:06:48You could quite easily forget that, if you thought to yourself,
0:06:48 > 0:06:51"Oh, I can't be bothered to get the communication aid"
0:06:51 > 0:06:53or "We'll have to wait now."
0:06:53 > 0:06:55You have to have a lot of patience and time with them,
0:06:55 > 0:06:57because it's really important
0:06:57 > 0:06:59that they get to express how they're feeling.
0:07:08 > 0:07:12We used to talk at night and put the world to rights.
0:07:12 > 0:07:16Kirstie is the noisy one, and she would jabber on all night.
0:07:17 > 0:07:22We talked a lot of crap. I miss those chats.
0:07:25 > 0:07:29Now we have to lie there next to each other in silence.
0:07:29 > 0:07:31It sucks.
0:07:35 > 0:07:39Using our new speech aids to talk to someone has opened up
0:07:39 > 0:07:41a whole new world for us.
0:07:41 > 0:07:45We hope that listening to these conversations
0:07:45 > 0:07:48will give you a better understanding of our lives.
0:07:51 > 0:07:54The only one who knows what you're going through is Catherine.
0:07:54 > 0:07:57And the only one who knows what you're going through is Kirstie.
0:07:57 > 0:07:59And yet you can't speak about it.
0:07:59 > 0:08:02That's pretty pants really, isn't it?
0:08:03 > 0:08:05It's pretty pants.
0:08:05 > 0:08:07Miss it.
0:08:07 > 0:08:11You miss being able to have a good chat with your sister?
0:08:11 > 0:08:13I bet you do, sweetheart.
0:08:20 > 0:08:23How hard it is. How hard it is.
0:08:24 > 0:08:28Is that something you think about every day, Cath?
0:08:28 > 0:08:29Yeah.
0:08:33 > 0:08:37Would it help if you could talk to your sister a bit more about it?
0:08:37 > 0:08:41Maybe that's something we can do together, the three of us.
0:08:41 > 0:08:43Yeah, that'd be good, wouldn't it?
0:08:43 > 0:08:48If when I meet you, we could have some time together, the three of us.
0:08:48 > 0:08:49Yeah?
0:08:49 > 0:08:51Then you can just have time with each other
0:08:51 > 0:08:54to talk about different things.
0:08:54 > 0:08:55Yeah?
0:09:27 > 0:09:30- Come on, then!- BOTH: Wey-hey!
0:09:30 > 0:09:34We live in Llanelli with our parents, Kris and Lyn.
0:09:34 > 0:09:38Daddy is sarcastic, grumpy and he swears a lot,
0:09:38 > 0:09:40but he's got a wicked sense of humour.
0:09:43 > 0:09:46Mammy is funny and lovable.
0:09:46 > 0:09:50She looks after us and she thinks about everyone.
0:09:50 > 0:09:52They both have hearts of gold.
0:10:00 > 0:10:05The girls are staying at Ty Hafan this week,
0:10:05 > 0:10:09and they're having a pampering day today.
0:10:09 > 0:10:12They've had their hair done, they've had their make-up done
0:10:12 > 0:10:16and they are just loving it. They're really lapping it up, they are.
0:10:17 > 0:10:23One of the best things about Ty Hafan is that we get treated normally.
0:10:23 > 0:10:27Some people tend to treat us like babies.
0:10:27 > 0:10:30Just because I can't talk they patronise me
0:10:30 > 0:10:32and treat me like I'm stupid.
0:10:32 > 0:10:34They make me angry too.
0:10:34 > 0:10:38I know they're trying to be nice but they are just being idiots.
0:10:40 > 0:10:45It can take me all day to get them ready, you know, make-up, hair.
0:10:45 > 0:10:48For them to come here and do it here, it's just nice,
0:10:48 > 0:10:52it's just something that a normal 17-year-old girl would do anyway.
0:10:55 > 0:10:59'Amy-Claire is our friend who we met at the hospice.
0:10:59 > 0:11:01'She's a good laugh and pretty.
0:11:01 > 0:11:05'She goes nuts when people stare at her.
0:11:05 > 0:11:07'She knows how we feel.'
0:11:07 > 0:11:10'I think it's hard when you have a physical disability on its own'
0:11:10 > 0:11:14because people automatically assume
0:11:14 > 0:11:17you're thick or you don't understand what's going on,
0:11:17 > 0:11:20but once you start talking to them,
0:11:20 > 0:11:23that person's opinion can get turned around
0:11:23 > 0:11:26because they realise you have a sense of humour,
0:11:26 > 0:11:30'you can make a joke about it and lighten the atmosphere,
0:11:30 > 0:11:33'but I think for the twins, it must be twice as hard
0:11:33 > 0:11:36'because they've not just got the physical impairment,
0:11:36 > 0:11:40'they can't talk to someone, so not only are they missing out
0:11:40 > 0:11:43'on the physical side of the relationship
0:11:43 > 0:11:48'but they're missing out with a lot of people on the emotional side,
0:11:48 > 0:11:50on the social part.
0:11:50 > 0:11:54I think the twins cope remarkably well,
0:11:54 > 0:11:56considering the situation.
0:11:56 > 0:11:59They laugh and they smile and they get on with it,
0:11:59 > 0:12:03they do normal things.
0:12:03 > 0:12:05But it's like you see through the cracks,
0:12:05 > 0:12:08I think, especially when you're in a similar situation.
0:12:08 > 0:12:13You see something happen and you think,
0:12:13 > 0:12:19"That must be a really, really shitty day or moment.
0:12:19 > 0:12:21"It must be really annoying."
0:12:21 > 0:12:24Look at those smiles! Oh!
0:12:24 > 0:12:28How long have you been sisters? That's a tricky question!
0:12:28 > 0:12:31Is it 18 you are this year, are you?
0:12:31 > 0:12:33Wow! I wish I was 18 again.
0:12:33 > 0:12:35LAUGHTER
0:12:38 > 0:12:41CHAT ECHOES DISTANTLY
0:12:51 > 0:12:53I'm having a spasm here.
0:12:53 > 0:12:54I can't control them.
0:12:54 > 0:12:59I shake, and my muscles sometimes lock in position.
0:13:05 > 0:13:10Sometimes they hurt so much I want to scream, but I can't.
0:13:34 > 0:13:36We both suffer from bad spasms.
0:13:36 > 0:13:39We have small ones every few minutes,
0:13:39 > 0:13:41around 100 a day.
0:13:41 > 0:13:44If we feel emotional in any way,
0:13:44 > 0:13:46happy or sad,
0:13:46 > 0:13:48it makes our spasms worse.
0:13:48 > 0:13:54We've found ourselves in a vicious circle where spasms make us upset,
0:13:54 > 0:13:56and getting upset makes us spasm.
0:14:00 > 0:14:05I'm not going to have an hand left if it gets any stronger!
0:14:07 > 0:14:11'Catherine has been fab for most of the day. She really enjoyed it,
0:14:11 > 0:14:15'but she's been a bit overwhelmed at times, I think,
0:14:15 > 0:14:18'and she's had a couple of tearful moments'
0:14:18 > 0:14:22where she's had to just have a little bit of time out
0:14:22 > 0:14:25just to chill a little bit and think about things
0:14:25 > 0:14:27'and it's certainly hard for us
0:14:27 > 0:14:30'to get to the bottom of why she feels overwhelmed.
0:14:30 > 0:14:34'Sometimes she says she doesn't even know why she feels overwhelmed
0:14:34 > 0:14:37'or cries, it just comes over her like a wave I guess, at times,
0:14:37 > 0:14:39'and it's difficult for her,
0:14:39 > 0:14:42'like I say, especially because she hasn't got the use of her voice.'
0:14:49 > 0:14:51Because she's been bad,
0:14:51 > 0:14:54she's been having spasms for the last two years,
0:14:54 > 0:14:57she's been with me a lot and she's very, very clingy to me.
0:14:57 > 0:15:01What Catherine finds hard more than Kirstie, Catherine is a worrier
0:15:01 > 0:15:03but Kirstie lets it all go over her head -
0:15:03 > 0:15:06she doesn't worry about anything until it actually happens.
0:15:06 > 0:15:11Catherine is finding it harder to deal with the fact she is disabled.
0:15:11 > 0:15:14She wants to be like her friends.
0:15:17 > 0:15:20We've got four hands.
0:15:20 > 0:15:21This way, girls.
0:15:21 > 0:15:25Beautiful. Perfect. Hold that there.
0:15:26 > 0:15:28I...
0:15:30 > 0:15:31T...
0:15:31 > 0:15:35Feel devastated about my condition.
0:15:38 > 0:15:41What part of your condition makes you feel so devastated?
0:15:41 > 0:15:43S...
0:15:44 > 0:15:46M...
0:15:46 > 0:15:48Spasm.
0:15:48 > 0:15:49Your spasms?
0:15:52 > 0:15:56That's a big, bold statement to make. Does it get you down?
0:15:56 > 0:15:59- Don't sleep.- It stops you sleeping?
0:15:59 > 0:16:02Do think your spasms are getting better or worse?
0:16:03 > 0:16:05- Same.- So they're the same?
0:16:07 > 0:16:11Is it the spasms that get you down the most out of all your condition?
0:16:11 > 0:16:15Yeah. Worse than not being able to walk?
0:16:15 > 0:16:17Worse than not being able to talk?
0:16:17 > 0:16:21The spasms are the worst thing for you?
0:16:21 > 0:16:23Do you think you can talk to your doctor about it
0:16:23 > 0:16:25when you go to see your doctor next?
0:16:25 > 0:16:26No point.
0:16:26 > 0:16:30There's no point? Do you think she might not be able to help?
0:16:30 > 0:16:33She might be able to help. What do you think?
0:16:33 > 0:16:35No?
0:16:35 > 0:16:37So what can we do to help your spasms?
0:16:40 > 0:16:42Don't know.
0:16:42 > 0:16:45Do you think there's anything that the doctors can do to help?
0:16:47 > 0:16:49No?
0:16:49 > 0:16:52Do they know that your spasms get you down, do you think?
0:16:52 > 0:16:55Yeah, do you tell them?
0:16:55 > 0:16:56Mm-hm.
0:17:04 > 0:17:06Sometimes I think, "Why me?"
0:17:06 > 0:17:10It's so unfair that it's happening to us.
0:17:11 > 0:17:16I used to wish for a cure, but I've given up hope.
0:17:16 > 0:17:20If I could ask a God what will happen,
0:17:20 > 0:17:23I'd ask, "How bad will it get?"
0:17:25 > 0:17:29I took them to school today. They should be in school by lunchtime
0:17:29 > 0:17:34because they had a photo taken of all Year 13.
0:17:34 > 0:17:37That was very emotional, seeing them all...
0:17:37 > 0:17:39You know, they're all together now
0:17:39 > 0:17:42and they're all going to be together in their prom
0:17:42 > 0:17:47and after then, they'll all go their separate ways, won't they?
0:17:47 > 0:17:49And...
0:17:49 > 0:17:53It was emotional to think, you know,
0:17:53 > 0:17:58they should be doing the same as what everybody else is doing.
0:17:58 > 0:17:59I can't do this today.
0:18:06 > 0:18:09Ysgol Gyfun y Strade.
0:18:09 > 0:18:13A lot of kids were frightened of us in school
0:18:13 > 0:18:18because they didn't understand why we are in wheelchairs and cannot talk.
0:18:20 > 0:18:24One day, we did a PowerPoint presentation
0:18:24 > 0:18:26in assembly about our condition.
0:18:26 > 0:18:33Since then, everyone is so much nicer to us and aren't afraid to say hello.
0:18:33 > 0:18:37We've learnt from that how important it is to talk.
0:18:37 > 0:18:41This was the inspiration for this film.
0:18:41 > 0:18:44The only way you could describe the atmosphere
0:18:44 > 0:18:45when you're with the girls is nuts.
0:18:45 > 0:18:48They are just... You can be in tears one minute with them,
0:18:48 > 0:18:51you know, talking about really difficult issues,
0:18:51 > 0:18:54and the next minute, Kirstie will say something totally off the wall,
0:18:54 > 0:18:58totally not related whatsoever, and have you all in stitches
0:18:58 > 0:19:00or a nice boy can walk past
0:19:00 > 0:19:03and they are both just turn their heads like that.
0:19:03 > 0:19:06You think, "Hang on, are we talking about something serious?"
0:19:06 > 0:19:08They've obviously been distracted
0:19:08 > 0:19:12but they don't... Though things are really difficult for the girls,
0:19:12 > 0:19:15they don't tend to live their days dwelling on that,
0:19:15 > 0:19:19they kind of try and put a smile on each morning
0:19:19 > 0:19:21and have as much fun as they can through the day
0:19:21 > 0:19:24and they're very conscious of everybody else around them,
0:19:24 > 0:19:26they want to look after Mam and Dad
0:19:26 > 0:19:29and the staff at school and all the staff at Ty Hafan,
0:19:29 > 0:19:32they want to make sure that they enjoy their company as well
0:19:32 > 0:19:34and that they're OK. They're very caring girls.
0:19:34 > 0:19:37They want to make sure that everybody's happy
0:19:37 > 0:19:39and is having a nice time, but they're just nuts.
0:19:39 > 0:19:41Absolutely nuts.
0:19:44 > 0:19:47We turn 18 today.
0:19:47 > 0:19:53Now that we're adults, we can make our own decisions about our lives.
0:19:55 > 0:19:58It's a bit scary, to be honest.
0:19:58 > 0:20:02Since we were small, people have always made decisions for us,
0:20:02 > 0:20:06especially since we lost the ability to talk.
0:20:06 > 0:20:08SHE LAUGHS
0:20:21 > 0:20:24Oh, my God, what is it?
0:20:24 > 0:20:27That was my idea, that was.
0:20:29 > 0:20:31Just in case, Cath, just in case.
0:20:31 > 0:20:34You've always got to be prepared now.
0:20:34 > 0:20:36Do you know what it is, Kirst?
0:20:36 > 0:20:40THEY ALL LAUGH
0:20:43 > 0:20:46There's time to get the habit.
0:20:46 > 0:20:48'This time last year,'
0:20:48 > 0:20:52all I said was that I hoped the girls would be strong enough
0:20:52 > 0:20:55to actually enjoy their party
0:20:55 > 0:21:00and back in January, they had feeding PEGs put in their stomachs
0:21:00 > 0:21:02and they've actually put some weight on,
0:21:02 > 0:21:05where they're stronger and they can actually...
0:21:05 > 0:21:07Even though they're tired today,
0:21:07 > 0:21:09they're coping with everything better,
0:21:09 > 0:21:16'so I didn't think they'd be as good now as what they actually are.'
0:21:16 > 0:21:18'Um...'
0:21:19 > 0:21:22'You know, obviously I don't know what's going to...
0:21:22 > 0:21:25'I haven't thought about what's going to happen after now
0:21:25 > 0:21:29'because we've only aimed as far as their 18th birthday,
0:21:29 > 0:21:35'you know, we haven't... Well, I haven't looked too far ahead
0:21:35 > 0:21:37'from their 18th birthday.'
0:21:37 > 0:21:41- ALL:- # Penblwydd hapus i chi
0:21:41 > 0:21:45# Penblwydd hapus i chi
0:21:45 > 0:21:50# Penblwydd hapus i Catherine a Kirstie
0:21:50 > 0:21:53# Penblwydd hapus i chi! #
0:21:53 > 0:21:56- Hip-hip!- Hurray!
0:21:56 > 0:21:59- Hip-hip!- Hurray!- Hip-hip!- Hurray!
0:21:59 > 0:22:02PEN BUZZES
0:22:02 > 0:22:09I always wanted a tattoo but Mammy wouldn't let me until I was 18.
0:22:09 > 0:22:11The other day, I got one.
0:22:11 > 0:22:16I got one too because I didn't want to be different to Kirstie.
0:22:16 > 0:22:21We both feel butterflies help us forget our problems and relax,
0:22:21 > 0:22:23so that's what we got.
0:22:23 > 0:22:27Really, I don't feel that different to when I was 17.
0:22:27 > 0:22:30I feel proud to be an adult
0:22:30 > 0:22:34and it's good to know I can do what I want.
0:22:44 > 0:22:47For years, we've planned a big ball
0:22:47 > 0:22:50to celebrate reaching adulthood
0:22:50 > 0:22:52and tonight, it's finally happening.
0:22:52 > 0:22:55One, two, three...
0:22:57 > 0:22:59Hey!
0:23:00 > 0:23:01SHE MUMBLES
0:23:09 > 0:23:11O, bois bach.
0:23:12 > 0:23:16In the future, the condition is going to get worse.
0:23:16 > 0:23:20I do worry about it, but I try not to think about it.
0:23:22 > 0:23:24Gweithio?
0:23:28 > 0:23:32No matter how hard it gets, we love life
0:23:32 > 0:23:36and we're determined to live it to the full.
0:23:36 > 0:23:40We're getting on with our adult life, whatever that may bring.
0:23:44 > 0:23:47We're off to the Parc y Scarlets at the moment
0:23:47 > 0:23:52for a night on the cwrw, as you do, like. Isn't it?
0:23:52 > 0:23:53Good night.
0:24:06 > 0:24:09Carry on being happy.
0:24:09 > 0:24:12Is that what you plan to do?
0:24:13 > 0:24:15What's your biggest hope?
0:24:18 > 0:24:25I will think about my wedding. I will think about my wedding.
0:24:25 > 0:24:27You'll think about your wedding?
0:24:27 > 0:24:30Is it important that you are able to grow up
0:24:30 > 0:24:34and have a bit of independence? You can have a relationship
0:24:34 > 0:24:37and meet somebody and take it from there?
0:24:42 > 0:24:47Do you think you'd be able to have that independence, with your Fields?
0:24:47 > 0:24:50Will you be able to?
0:24:50 > 0:24:52No?
0:24:53 > 0:24:56- I want to.- You want to?
0:24:56 > 0:25:00What, get married and live with a husband?
0:25:02 > 0:25:04I want to stay here.
0:25:04 > 0:25:06You want to stay here?
0:25:06 > 0:25:08Live with your mam and dad?
0:25:08 > 0:25:12You don't want to live on your own? With carers? No?
0:25:14 > 0:25:18I thought you just said you wanted to get married, though, Cath.
0:25:23 > 0:25:26Like the Waltons? OK.
0:25:26 > 0:25:28Why is that, Cath?
0:25:28 > 0:25:29I'm scared.
0:25:29 > 0:25:33You're scared, Cath? What, to move away from Mammy and Daddy?
0:25:33 > 0:25:38I think most 18-year-olds would feel the same, Cath, wouldn't they?
0:25:50 > 0:25:54I've been looking forward to tonight for ages.
0:25:54 > 0:25:57We are dressing up in our princess frocks.
0:25:57 > 0:26:02There's going to be a band, all our family and friends,
0:26:02 > 0:26:04and it's going to be the best celebration.
0:26:04 > 0:26:06I'm a bit nervous too.
0:26:10 > 0:26:12Turning 18 is cool.
0:26:12 > 0:26:16We made a card each to thank Mammy and Daddy.
0:26:16 > 0:26:18I wrote, "Thanks for my party,
0:26:18 > 0:26:22"my presents and my cocktails."
0:26:23 > 0:26:26I also thanked Dad for giving Mammy his sperm,
0:26:26 > 0:26:29making me so lush and gorgeous!
0:26:29 > 0:26:32THEY ALL SHOUT AT ONCE
0:26:33 > 0:26:36Ready when you please!
0:26:39 > 0:26:41Happy birthday!
0:26:41 > 0:26:44It was great to celebrate.
0:26:44 > 0:26:48At one point, Hayley made us watch the big screen.
0:26:48 > 0:26:53There were messages for us from all sorts of famous people
0:26:53 > 0:26:55including Harry Styles from One Direction.
0:26:55 > 0:26:58Hi, Kirstie and Catherine. We're One Direction
0:26:58 > 0:27:00and we just want to say we cannot wait to meet you
0:27:00 > 0:27:02at one of our concerts next year.
0:27:02 > 0:27:04- We'll see you there. - See you soon!- Bye!
0:27:04 > 0:27:05My cousin was in bits!
0:27:05 > 0:27:08SHE SCREAMS
0:27:14 > 0:27:20MUSIC: "Just The Way You Are" by Bruno Mars
0:27:22 > 0:27:25I think I will have a boyfriend, but it will be difficult.
0:27:25 > 0:27:31The kind of man I'm into is tall, fit and a nice guy
0:27:31 > 0:27:37but who knows? One day I might even get a bit of action.
0:27:39 > 0:27:43So your laying in bed of a morning, thinking, "I can't do this no more."
0:27:43 > 0:27:47What makes you think of smiling then?
0:27:48 > 0:27:50H...
0:27:50 > 0:27:52A...
0:27:52 > 0:27:54R...
0:27:54 > 0:27:56R...
0:27:56 > 0:27:57Y.
0:27:58 > 0:28:00Harry.
0:28:00 > 0:28:01HAYLEY LAUGHS
0:28:01 > 0:28:05Harry Styles makes you smile?
0:28:05 > 0:28:08You know, sometimes when we talk and I'm spending time with you
0:28:08 > 0:28:14I think you have all the same kind of thoughts and feelings
0:28:14 > 0:28:19as anybody else who's nearly 18. You think that's true?
0:28:19 > 0:28:22So do you think about boys?
0:28:23 > 0:28:25Yeah?
0:28:25 > 0:28:28Do you think about sex and things like that?
0:28:30 > 0:28:33No? You see, I know that's a lie.
0:28:33 > 0:28:35How can you sit there and say no?
0:28:35 > 0:28:37You are such a liar!
0:28:37 > 0:28:39You don't, Cath?
0:28:39 > 0:28:41No, you just want more of a relationship
0:28:41 > 0:28:44that's based on friendship, do you?
0:28:44 > 0:28:48Yeah? What about you, Kirst?
0:28:52 > 0:28:53Be honest!
0:28:58 > 0:29:00Sex.
0:29:00 > 0:29:02You think about sex? Yeah?
0:29:02 > 0:29:05It's quite normal, though, isn't it, for girls who are nearly 18?
0:29:05 > 0:29:08I think that's the biggest thing about being an adult,
0:29:08 > 0:29:11you can do things like that, isn't it?
0:29:11 > 0:29:14Catherine's got her head in her hands!
0:29:14 > 0:29:18"Oh, the shame! My sister's talking about sex!"
0:29:18 > 0:29:21How do you feel, Kirst, about the fact that
0:29:21 > 0:29:24for you to have a relationship, it'll be so much harder
0:29:24 > 0:29:28and need a lot of understanding on yours
0:29:28 > 0:29:31and the boy's part, really, wouldn't it?
0:29:31 > 0:29:34What do you think about that?
0:29:36 > 0:29:42Do you think it's worth a try? Think it'll be worth all the hassle?
0:29:42 > 0:29:43Yeah.
0:29:47 > 0:29:49I feel so lucky.
0:29:49 > 0:29:52We have such caring parents.
0:29:52 > 0:29:54They do everything for us.
0:29:54 > 0:30:00People think we're brave, going through so much and trying to smile.
0:30:00 > 0:30:04I think Mammy and Daddy are the brave ones.
0:30:04 > 0:30:08I really don't know what kind of a life they're going to have from now on.
0:30:08 > 0:30:11Um...
0:30:11 > 0:30:14I can see...
0:30:14 > 0:30:18how the problems that they've got,
0:30:18 > 0:30:22how those problems, these new little problems starting,
0:30:22 > 0:30:26and this is what their condition has been all along from day one.
0:30:26 > 0:30:31When it first started, you see little bits of things.
0:30:31 > 0:30:35And, all of a sudden, it's worse and it's there all the time.
0:30:35 > 0:30:37Deep down, I know...
0:30:37 > 0:30:40I know that...
0:30:40 > 0:30:42these little problems are going to go worse.
0:30:42 > 0:30:46And they're going to cause big problems, you know.
0:30:46 > 0:30:48Does that make sense?
0:30:50 > 0:30:53Will, you know, will they always be cared for so much
0:30:53 > 0:30:55- that they'll always be children? - Yeah.
0:30:55 > 0:30:58Will they ever have that kind of independence to be an adult?
0:30:58 > 0:31:00Can you kind of...?
0:31:04 > 0:31:07SHE SIGHS
0:31:07 > 0:31:09No, I can't.
0:31:20 > 0:31:22Why do you think Mammy cries, Cath?
0:31:24 > 0:31:27She doesn't like what is happening.
0:31:27 > 0:31:33Mammy cries cos she doesn't like what's happening to you.
0:31:33 > 0:31:36And she wishes she could make it better.
0:31:42 > 0:31:44SPEECH IS UNCLEAR
0:31:48 > 0:31:51I'll have to read this, I didn't get much of that.
0:31:53 > 0:31:58Ah... "Be happy and smile, life is too short not to be happy."
0:31:59 > 0:32:02Yeah? Is that your motto?
0:32:02 > 0:32:04Yeah?
0:32:04 > 0:32:07Is it hard to be happy all the time like this?
0:32:08 > 0:32:10Mmm.
0:32:10 > 0:32:12Cos you're always smiling.
0:32:14 > 0:32:16I think, sometimes, people might look and think,
0:32:16 > 0:32:21"Oh, they're fine, life's OK for them, cos they're always smiling."
0:32:22 > 0:32:24Is that just a mask?
0:32:25 > 0:32:26Yeah.
0:32:26 > 0:32:29A smile gets you through.
0:32:29 > 0:32:31A smile gets you through.
0:32:35 > 0:32:36It does, doesn't it?
0:32:38 > 0:32:41You know, when you think about the girls and what they live with each day
0:32:41 > 0:32:46and how much each day is a struggle,
0:32:46 > 0:32:49you kind of appreciate
0:32:49 > 0:32:56how they want to try and be happy and live life as full as they can...
0:32:57 > 0:33:02..because they know that each day can bring a new problem for them,
0:33:02 > 0:33:06and they know that the future is really uncertain.
0:33:06 > 0:33:09I was talking to Cath last week
0:33:09 > 0:33:15and she said that she's been thinking a lot about... about dying recently.
0:33:15 > 0:33:19And she was asking questions around that
0:33:19 > 0:33:22and speaking about her fears and...
0:33:24 > 0:33:26..and what that might be for her.
0:33:26 > 0:33:28And she was talking about things like,
0:33:28 > 0:33:30"Will I be in a lot of pain?
0:33:30 > 0:33:33"Who will help me? Who will support me?"
0:33:33 > 0:33:36And, at the same time,
0:33:36 > 0:33:39what was heartbreaking to hear, but a lovely thought,
0:33:39 > 0:33:42she was asking questions about her sister, so she was saying,
0:33:42 > 0:33:44"But what will happen to Kirstie?
0:33:44 > 0:33:49"If I die, who will help Kirstie? Who will be with Kirstie?"
0:33:49 > 0:33:51And I just thought, for an 18-year-old to have to think,
0:33:51 > 0:33:53not only about your own death,
0:33:53 > 0:33:55but about your twin sister's as well.
0:33:57 > 0:33:59It shouldn't have to be, should it?
0:33:59 > 0:34:01It shouldn't have to be.
0:34:19 > 0:34:24A charity has given us a special holiday to Disneyland.
0:34:28 > 0:34:31Cinderella is my favourite.
0:34:31 > 0:34:33I still watch the film now.
0:34:33 > 0:34:37It reminds me of when I was small, before I had Fields condition.
0:34:40 > 0:34:42I've always liked Disney
0:34:42 > 0:34:46because there's always a happy ending for the princesses.
0:34:50 > 0:34:53Don't feel sorry for us.
0:34:53 > 0:34:56No-one lives for ever.
0:34:56 > 0:34:58Heaven is special.
0:34:58 > 0:35:01I think when people go to heaven they are cured.
0:35:01 > 0:35:03It's like Disneyland.
0:35:11 > 0:35:14I believe in heaven, but I don't believe in God.
0:35:18 > 0:35:21Why would he make our lives hell like this?
0:35:28 > 0:35:30People say we're brave.
0:35:30 > 0:35:34I just think that's because we've got a spirit for life.
0:35:34 > 0:35:37There are other people worse off than us.
0:36:04 > 0:36:07O...K.
0:36:07 > 0:36:08OK.
0:36:12 > 0:36:15Do you worry about your sister, Cath?
0:36:15 > 0:36:17Do you? Do you worry about Catherine, Kirst?
0:36:19 > 0:36:21Yeah.
0:36:21 > 0:36:24Is it hard to see each other go through it?
0:36:28 > 0:36:30I love you.
0:36:32 > 0:36:35Aw-w, Kirst.
0:36:37 > 0:36:40SHE PANTS
0:36:45 > 0:36:48Is it nice to use your voice now and again, Kirst, when you can?
0:36:50 > 0:36:53We talk with our eyes.
0:36:54 > 0:36:57You talk through your eyes...
0:36:57 > 0:37:00Ah! ..to each other?
0:37:00 > 0:37:03So you know what each other is thinking,
0:37:03 > 0:37:06just by looking at each other's eyes?
0:37:06 > 0:37:10Can you understand when Catherine is said even if she doesn't say it?
0:37:10 > 0:37:13Can you understand when she's upset even if she doesn't say it?
0:37:13 > 0:37:15Can she understand you?
0:37:15 > 0:37:16Mmm.
0:37:16 > 0:37:20How do you think she's doing today, Cath? Is she all right?
0:37:20 > 0:37:21Yeah?
0:37:21 > 0:37:23Is she happy?
0:37:47 > 0:37:53I know it's hard, but keep smiling. I know it's hard, but keep smiling.
0:38:12 > 0:38:14Don't feel sorry for us.
0:38:14 > 0:38:18Life is too short to spend time feeling blue.
0:38:18 > 0:38:22Have some fun, do something crazy once in a while.
0:38:22 > 0:38:24Love, laugh, live...
0:38:24 > 0:38:27And always wear a smile.
0:38:58 > 0:39:02Subtitles by Red Bee Media Ltd