0:00:02 > 0:00:04On a rocky beach in South Wales,
0:00:04 > 0:00:07where the waves lap the shores and the seagulls cry,
0:00:07 > 0:00:12children can be heard playing, singing and laughing merrily.
0:00:12 > 0:00:14This is Ty Hafan,
0:00:14 > 0:00:17a place where the families of children expected to die young
0:00:17 > 0:00:19learn to live life to the full.
0:00:19 > 0:00:24Butterflies are seen everywhere in Ty Hafan Children's Hospice,
0:00:24 > 0:00:26a metaphor for the short yet beautiful lives
0:00:26 > 0:00:30that the charity helped to create for the children.
0:00:33 > 0:00:37When a child is so unwell that they're not expected to live into adulthood,
0:00:37 > 0:00:39they turn to Ty Hafan.
0:00:39 > 0:00:44Referred in a time of need, they're in search of care and support.
0:00:44 > 0:00:46The hospice helps, often over many years,
0:00:46 > 0:00:48to fulfil every potential
0:00:48 > 0:00:50and at the end of their lives,
0:00:50 > 0:00:54they are there to provide support, care and love.
0:00:57 > 0:00:59Fab!
0:00:59 > 0:01:02Twins whose beautiful smiles defy the cruelty
0:01:02 > 0:01:03of their unique condition,
0:01:03 > 0:01:07and a teenage boy laughing in the face of his illness.
0:01:07 > 0:01:10These are stories of humanity shining through
0:01:10 > 0:01:11in a time of adversity.
0:01:25 > 0:01:26COMPUTERISED SPEECH:
0:01:32 > 0:01:34COMPUTERISED SPEECH:
0:01:41 > 0:01:44Kirstie and Catherine Fields from Llanelli are obsessed
0:01:44 > 0:01:47with clothes, music and boy bands,
0:01:47 > 0:01:50all the things teenage girls love.
0:01:53 > 0:01:56Their identical genes have given them both their beautiful smiles,
0:01:56 > 0:02:00bubbly characters and a special shared life together.
0:02:00 > 0:02:04But those same genes have sentenced them to the same fate,
0:02:04 > 0:02:06a unique disease that bears their name.
0:02:06 > 0:02:09Fields condition is a degenerative neurological disease
0:02:09 > 0:02:12that has gradually eaten away at their muscle control.
0:02:13 > 0:02:19TOGETHER: # Santa's coming to town
0:02:19 > 0:02:22# He sees you when you're sleeping
0:02:22 > 0:02:25# He knows when you're awake... #
0:02:25 > 0:02:29The twins were confined to wheelchairs at eight years old.
0:02:29 > 0:02:33And by now, only 17, they must rely on a machine to speak for them.
0:02:33 > 0:02:35COMPUTERISED SPEECH:
0:02:43 > 0:02:44COMPUTERISED SPEECH:
0:02:54 > 0:02:58Recently there's been a worrying deterioration in the girls' condition.
0:02:58 > 0:03:00They've been referred to the hospice,
0:03:00 > 0:03:02but as the word often evokes fear,
0:03:02 > 0:03:06Hayley Mason from Ty Hafan has come to see them in school
0:03:06 > 0:03:08and try to dispel their worries.
0:03:08 > 0:03:10Hello, bach.
0:03:10 > 0:03:12Syt wyt ti?
0:03:12 > 0:03:13Da iawn?
0:03:15 > 0:03:18Catherine... Hello, bach.
0:03:18 > 0:03:19Da iawn?
0:03:23 > 0:03:27'If they were to look on the web about, "What is a hospice?"
0:03:27 > 0:03:31it tells them that perhaps it's a quiet place where adults go to die.
0:03:31 > 0:03:34So teenagers don't really understand what a hospice is.
0:03:34 > 0:03:36So understandably they're a bit anxious.
0:03:36 > 0:03:40'But I think once they've been, and they've had a look around and met one or two of us,
0:03:40 > 0:03:43'they get a better picture of it and they understand
0:03:43 > 0:03:46'that it's a place where they can come and relax, have a bit of fun,
0:03:46 > 0:03:49'recharge their batteries, have a break from mum and dad
0:03:49 > 0:03:51'and have a little holiday with other teenagers
0:03:51 > 0:03:53'that are going through the same as them.'
0:03:53 > 0:03:58Their mum, Lyn, has seen Catherine and Kristie's care needs grow
0:03:58 > 0:03:59as the girls have grown.
0:03:59 > 0:04:03Hayley's going home with them to learn more about their lives
0:04:03 > 0:04:05and get a clearer picture of their needs.
0:04:12 > 0:04:15They've got patterns for Parkinson's,
0:04:15 > 0:04:18they have got patterns for cerebral palsy and other things,
0:04:18 > 0:04:21but they haven't got the whole pattern for anything.
0:04:21 > 0:04:25Their condition was actually named after them
0:04:25 > 0:04:28because nobody has seen anything like it.
0:04:28 > 0:04:31But what does it do for us? It doesn't help us.
0:04:31 > 0:04:34That's just a name, because where we've seen
0:04:34 > 0:04:37so many different consultants and doctors
0:04:37 > 0:04:42and we've been to different hospitals, everybody's dumbfounded.
0:04:42 > 0:04:45One professor told us, it's like looking into a crystal ball,
0:04:45 > 0:04:49nobody can tell you what's going to happen tomorrow because nobody knows.
0:04:49 > 0:04:51Who snores the most?
0:04:53 > 0:04:56'The girls are amazing really. They are so funny.
0:04:56 > 0:05:00'But they've both got their own personalities which is really nice.'
0:05:00 > 0:05:03They're just amazing, beautiful girls.
0:05:03 > 0:05:05And it's really lovely cos you look at them now,
0:05:05 > 0:05:07they want to wear their fashionable clothes,
0:05:07 > 0:05:10they want their make-up and hair done right,
0:05:10 > 0:05:11and why shouldn't they?
0:05:11 > 0:05:15They're just the same as any other teenager in that respect.
0:05:15 > 0:05:18But they're just amazingly beautiful, funny girls.
0:05:18 > 0:05:21I love them already and I've only just met them.
0:05:21 > 0:05:23Who chooses the DVD out of you?
0:05:23 > 0:05:27Do you always agree or do you argue? Have you got a favourite?
0:05:27 > 0:05:29Any one?
0:05:29 > 0:05:31They like everything. They like the Disney ones...
0:05:31 > 0:05:34- girly chick flicks.- Cool.
0:05:34 > 0:05:37'Lynn is just incredible, isn't she?'
0:05:37 > 0:05:38The way she copes.
0:05:38 > 0:05:41She doesn't have one daughter...
0:05:41 > 0:05:43that's ill, she has two.
0:05:43 > 0:05:46The way she copes with that is just remarkable.
0:05:46 > 0:05:48I take my hat off to her.
0:05:48 > 0:05:52And I think she tries to get through each day as best she can
0:05:52 > 0:05:54and tries to keep a positive attitude
0:05:54 > 0:05:57but you can see it's raw for her and that she's struggling.
0:05:57 > 0:05:59They're going to be 17 next week
0:05:59 > 0:06:01and we're at the stage now where...
0:06:03 > 0:06:06..they've got to have help with everything.
0:06:06 > 0:06:10They have problems lifting their arms...
0:06:10 > 0:06:13cos there's an ongoing deterioration.
0:06:15 > 0:06:17Going back when they were 11, 12,
0:06:17 > 0:06:20they could still dress themselves independently and things,
0:06:20 > 0:06:25with a little help, obviously, but most things they were still doing.
0:06:25 > 0:06:29We're at the stage now where they can't even turn over in bed themselves.
0:06:30 > 0:06:37I feel as if I should be doing everything because I'm their mother.
0:06:37 > 0:06:38But...
0:06:39 > 0:06:45because we've got to the stage where I'm struggling
0:06:45 > 0:06:52and the hardest thing I had to do was ask for help.
0:06:53 > 0:06:56They don't see themselves as disabled.
0:06:56 > 0:07:00They see themselves the same as what all their friends are.
0:07:00 > 0:07:03I think that is the hardest part because...
0:07:05 > 0:07:07..their dignity, everything, you know?
0:07:07 > 0:07:09But they've been very, very good
0:07:09 > 0:07:12and very understanding about everything.
0:07:12 > 0:07:15They know that we can't go on as we are.
0:07:15 > 0:07:18We've really, really got to have help.
0:07:25 > 0:07:27When families turn to a hospice,
0:07:27 > 0:07:30they often don't know what to expect.
0:07:31 > 0:07:36Where medicine offers no cure, Ty Hafan is a sanctuary.
0:07:36 > 0:07:40They help families from all over South Wales in many different ways.
0:07:40 > 0:07:44One major condition that plays a large part in the daily life of a hospice
0:07:44 > 0:07:48is Duchenne muscular dystrophy, a cruel incurable genetic condition
0:07:48 > 0:07:52that progressively destroys the muscles in the bodies of boys.
0:07:52 > 0:07:56However, this doesn't stop teenagers like Jack Thomas
0:07:56 > 0:08:00who are often the life and soul of the party at Ty Hafan.
0:08:00 > 0:08:01It was Jack's idea.
0:08:01 > 0:08:02- It wasn't.- It was!
0:08:02 > 0:08:03It was your idea.
0:08:03 > 0:08:05SHE YELPS
0:08:06 > 0:08:09It's a sad truth that Duchenne boys like Jack
0:08:09 > 0:08:12aren't expected to live far into adulthood.
0:08:12 > 0:08:14And as if that wasn't enough of a tragedy,
0:08:14 > 0:08:17fate recently played another cruel trick on Jack and his family.
0:08:20 > 0:08:21Hi.
0:08:23 > 0:08:26A few days ago, Jack was told that he had testicular cancer
0:08:26 > 0:08:29and would need an operation in hospital...
0:08:29 > 0:08:32news he took in his own inimitable fashion.
0:08:32 > 0:08:34I've got sweaty balls now.
0:08:34 > 0:08:36When I wake up, I'll have sweaty ball.
0:08:39 > 0:08:42Jack's operation took a fear-filled three hours.
0:08:42 > 0:08:45I've just spoken to the consultant, and the anaesthetist,
0:08:45 > 0:08:47he's doing really well.
0:08:47 > 0:08:51The tumour was contained, so they were able to remove it all
0:08:51 > 0:08:55and he's breathing on his own. So fantastic news.
0:08:55 > 0:08:59Mum Jo has always known that Jack will only live a short life.
0:08:59 > 0:09:01But this doesn't lessen the emotional strain
0:09:01 > 0:09:06of having confronted the fear of his death at only 15.
0:09:06 > 0:09:09Having helped the family through a traumatic few days,
0:09:09 > 0:09:12Shirley Valentino of Ty Hafan is now encouraging them
0:09:12 > 0:09:14to talk about their experience.
0:09:14 > 0:09:18Jack's recovering but it's soon clear
0:09:18 > 0:09:21it's not just his body that's been left scarred.
0:09:21 > 0:09:23He's reluctant to talk.
0:09:23 > 0:09:25- You would say if you were scared, Jack?- Yeah.
0:09:25 > 0:09:28Do you worry about your parents, Jack?
0:09:29 > 0:09:32- I don't know.- You don't know?
0:09:32 > 0:09:33No.
0:09:33 > 0:09:35I think you do, don't you?
0:09:35 > 0:09:36I don't know.
0:09:37 > 0:09:42I think you worry about us cos that's why you don't tell us much, isn't it?
0:09:43 > 0:09:45You try and protect us.
0:09:45 > 0:09:47You don't need to do that, do you?
0:09:47 > 0:09:49Cos we protect you.
0:09:50 > 0:09:52No.
0:09:52 > 0:09:53No?
0:09:53 > 0:09:55SHE CHUCKLES
0:09:56 > 0:10:01Jo is Jack's rock but Shirley also has an important part to play.
0:10:01 > 0:10:05I guess it's about for her to know there's someone for her, and for
0:10:05 > 0:10:12her to lean on me, and that it's kind of a holding position, holding those
0:10:12 > 0:10:16high emotions, for Jo, because she's trying to hold them for Jack.
0:10:18 > 0:10:21There are times when she's really, really upset,
0:10:21 > 0:10:25but that's not what she wants to show Jack, because what she wants
0:10:25 > 0:10:28to show Jack is that she's confident everything's going to be OK.
0:10:28 > 0:10:33Like any mum, she wants to say to her son, "Everything's going to be OK."
0:10:33 > 0:10:39Where, she sometimes might not feel that.
0:11:33 > 0:11:36Today I'm doing something that I don't get to do very often.
0:11:36 > 0:11:38I've come shopping with Catherine and Kirsty,
0:11:38 > 0:11:40to get to know them a little bit more,
0:11:40 > 0:11:42because when I was speaking to their mother, the first time I saw her,
0:11:42 > 0:11:46she said if I really wanted to meet them and really wanted to get to know them,
0:11:46 > 0:11:49I need to come shopping with them, because that's what they love to do.
0:11:54 > 0:11:57The twins have been really excited about today.
0:11:57 > 0:12:00It's a girls' day out with Hayley, mum and their friend Nicky.
0:12:00 > 0:12:03As well as shopping, they're going for a meal
0:12:03 > 0:12:05and to see one of their favourite pop stars in concert.
0:12:13 > 0:12:17Over recent weeks, Kirsty has been showing signs of deterioration,
0:12:17 > 0:12:22and has started having brain seizures, as well as painful muscle spasms.
0:12:22 > 0:12:25Her strong medication makes her drowsy, and today
0:12:25 > 0:12:29she's been reluctant to take her drugs.
0:12:29 > 0:12:32Come the afternoon, she's struggling.
0:12:32 > 0:12:35She says they hurt so that's not a good thing.
0:12:35 > 0:12:38She's in a bit of pain with them. She can sense they're coming,
0:12:38 > 0:12:41and she gets a little bit scared and she needs a lot of
0:12:41 > 0:12:45reassurance around that, and it's been heartbreaking to see her go
0:12:45 > 0:12:47through it really, because it's kind of scary for her.
0:12:49 > 0:12:55I think she's had about 16 of them, so we weren't going to come today,
0:12:55 > 0:12:58but Kirsty as she is, she's not going to miss out on a shopping trip,
0:12:58 > 0:13:00and a day out in Cardiff.
0:13:00 > 0:13:04She's trying to put a brave face on and carry on.
0:13:04 > 0:13:08She doesn't want to cry because she doesn't want to spoil her make up.
0:13:08 > 0:13:12But it is difficult, you know. It just overwhelms you sometimes.
0:13:22 > 0:13:26As the day goes on, Kirsty's issues continue.
0:13:26 > 0:13:29In the restaurant she has an upsetting seizure,
0:13:29 > 0:13:32but through it all, she continues to smile bravely.
0:13:34 > 0:13:38They're an inspiration to us, because they've had to go through so much.
0:13:38 > 0:13:44I know we've had to go through it, but it's them it's happening to,
0:13:44 > 0:13:51and through everything that they've gone through, they just keep smiling.
0:13:58 > 0:14:01Today has been all about building bonds with the girls.
0:14:01 > 0:14:06But for Hayley, on a personal level, it's a reminder that working
0:14:06 > 0:14:10with life-limited children and young people brings its own dangers.
0:14:12 > 0:14:16Because of their age and the way they dress and the way they are,
0:14:16 > 0:14:20I used to work with another family that had two daughters,
0:14:20 > 0:14:24that sadly died, and it just reminds me of being with them,
0:14:24 > 0:14:31and of what I went through with them, emotionally.
0:14:31 > 0:14:36So as soon as I see the girls, I can feel myself filling up, because I just...
0:14:36 > 0:14:39I almost don't want to do it.
0:14:39 > 0:14:42Because it just takes me back to where I was,
0:14:42 > 0:14:45when I worked with these other girls and when we lost them.
0:14:45 > 0:14:49But then I'm so glad I did take them on, because they're just so amazing.
0:14:49 > 0:14:52They are just beautiful, beautiful girls,
0:14:52 > 0:14:56and they're going to break my heart, put it that way.
0:15:04 > 0:15:07They do sell diabetic chocolate.
0:15:07 > 0:15:09Shirley has brought her colleague Paul Fisher
0:15:09 > 0:15:11to see Jack after his op.
0:15:11 > 0:15:14Conned his mum into a brand-new hoodie,
0:15:14 > 0:15:18saying that he's a diabetic and can't have Easter eggs.
0:15:18 > 0:15:19Tragic!
0:15:19 > 0:15:20Ta-ra, Jack. Behave.
0:15:20 > 0:15:22I think you should give Mum a kiss before you leave.
0:15:22 > 0:15:25Go on, chase after him! Go on, embarrass him!
0:15:25 > 0:15:27Give me a kiss, darling.
0:15:27 > 0:15:28THEY LAUGH
0:15:32 > 0:15:33She's evil.
0:15:33 > 0:15:35Don't come back with an ASBO!
0:15:35 > 0:15:38Over the years, as part of the Ty Hafan staff,
0:15:38 > 0:15:41Paul has spent a lot of time with Jack.
0:15:41 > 0:15:45If he wants to talk about his recent scare, he may well open up to Paul.
0:15:45 > 0:15:46Showing everyone your scar.
0:15:46 > 0:15:48- Is that a cool thing, having a scar?- I don't know.
0:15:48 > 0:15:51Be a good chat-up line, though, wouldn't it?
0:15:51 > 0:15:53"Do you want to see my scar?"
0:15:53 > 0:15:56Shall we try it?
0:15:56 > 0:15:57Want to see my scar?
0:15:57 > 0:15:59THEY LAUGH
0:16:05 > 0:16:07'I don't think Jack puts a brave face on,
0:16:07 > 0:16:10'I think that's just Jack anyway.
0:16:10 > 0:16:11'He just gets on with it
0:16:11 > 0:16:16'and doesn't really think about the issues and the problems.
0:16:16 > 0:16:18'He might for a split second,
0:16:18 > 0:16:21'but then will just take it in his stride
0:16:21 > 0:16:24'and move on to the next obstacle that comes up in his way.'
0:16:28 > 0:16:31- So you're lot happier now? - Yeah. Happier.
0:16:31 > 0:16:34I don't really know how I feel, really.
0:16:34 > 0:16:36Right. Were you feeling angry before?
0:16:36 > 0:16:40Oh yeah, I thought I was. I wasn't feeling happy.
0:16:40 > 0:16:41- Upset?- Yeah, a little bit.
0:16:41 > 0:16:44- I haven't been scared like that for ages.- Yeah?
0:16:44 > 0:16:46Yeah.
0:16:46 > 0:16:50Well, I couldn't do... Well, I would have been scared, put it that way.
0:16:50 > 0:16:52- Yeah. Who wouldn't, though?- Yeah.
0:16:54 > 0:16:56I think my mum was more scared, though.
0:16:56 > 0:16:58- Mums always are, aren't they?- Yeah.
0:16:58 > 0:17:00- Mums always worry.- Yeah.
0:17:00 > 0:17:02Did you speak to Mum and Dad about it?
0:17:02 > 0:17:06No, I don't really speak to them about it.
0:17:06 > 0:17:07- How come?- I don't know.
0:17:07 > 0:17:09- You try and deal with it yourself? - Yeah.
0:17:09 > 0:17:12Most of the time I do.
0:17:12 > 0:17:15Yeah, I don't get it. I don't ask, tell them or nothing.
0:17:15 > 0:17:19I'm not sure what my mum's going through, really.
0:17:19 > 0:17:22She bottles up, really, I think.
0:17:22 > 0:17:24- She'll be strong, though, for you.- Yeah.
0:17:24 > 0:17:26Jack's concerns about his mum
0:17:26 > 0:17:29are all too evident upon their return to the house.
0:17:34 > 0:17:39Jo has collapsed. It seems the constant worry has taken its toll.
0:17:41 > 0:17:45- I guess this is what we don't see of you sometimes.- Yeah.
0:17:46 > 0:17:50- The Jo that doesn't cope well.- Yeah. - We see the Jo that copes.
0:17:50 > 0:17:54'What we see on the outside is Jo trying to cope all the time
0:17:54 > 0:17:56'with Jack's condition and illness
0:17:56 > 0:17:58'and trying to put a brave face on it.
0:17:58 > 0:18:02'What we don't see is the Jo who's quite ill,
0:18:02 > 0:18:05'and she's having these collapses,
0:18:05 > 0:18:08'which are becoming more and more frequent,
0:18:08 > 0:18:10'and that's difficult.
0:18:10 > 0:18:16'And it's about seeing the private and public face of a parent, I guess.
0:18:16 > 0:18:19'The parent wants to show all the time that they're coping,
0:18:19 > 0:18:23'when underneath it, they're not, really.
0:18:23 > 0:18:27'And who, as a parent, wants to admit they can't cope any more,
0:18:27 > 0:18:29'physically and mentally?
0:18:29 > 0:18:33'It's really hard. Really difficult.'
0:18:33 > 0:18:36They'll be glad to put this difficult period behind them.
0:18:36 > 0:18:40For now, all the family can do is look forward to happier times
0:18:40 > 0:18:42at Jack's upcoming 16th birthday.
0:18:42 > 0:18:44See you later. See you later, Jack.
0:18:44 > 0:18:47- Bye, guys, take care. See you later. - Ta-ra.
0:18:58 > 0:19:00THEY LAUGH
0:19:10 > 0:19:14'It's first time that they've had any kind of care on this level,
0:19:14 > 0:19:16'from anybody other than their mum,
0:19:16 > 0:19:18'so there's a bit of anxiety over that.
0:19:18 > 0:19:21'I think 50% Mum is anxious about sharing them,
0:19:21 > 0:19:23'and 50% of it is the girls.'
0:19:27 > 0:19:29Can I have a cwtch? Oh, fab.
0:19:31 > 0:19:35The Fields twins' first stay at the hospice is all planned.
0:19:35 > 0:19:40There'll be takeaways, videos, and endless pampering.
0:19:40 > 0:19:42What we're going to do tonight
0:19:42 > 0:19:44is put your hand prints on the walls, girls, OK?
0:19:44 > 0:19:49Hundreds of children have left their mark here over the years,
0:19:49 > 0:19:51and in many different ways.
0:19:51 > 0:19:54The walls are a gallery of the history of all the children,
0:19:54 > 0:19:57families, parents and friends who have stayed here,
0:19:57 > 0:20:01who together make up the Ty Hafan family.
0:20:01 > 0:20:04Everybody that comes to Ty Hafan, every child and family that comes,
0:20:04 > 0:20:07have their hand prints put on the wall.
0:20:07 > 0:20:11Today, we're going to do the Fields twins, and Mum and Dad.
0:20:11 > 0:20:13BOTTLE SQUELCHES
0:20:13 > 0:20:14That is not me!
0:20:16 > 0:20:19- Excuse you!- They're all laughing!
0:20:19 > 0:20:23What about you, Kirst, do I need to do other colours?
0:20:23 > 0:20:25Yeah, I knew you were going to say that. What colour?
0:20:25 > 0:20:31'When we first heard Ty Hafan, obviously I knew Ty Hafan was
0:20:31 > 0:20:36'a hospice for children, but I didn't know a lot about it.'
0:20:36 > 0:20:39And you think, "Oh, Ty Hafan," you think...
0:20:40 > 0:20:43You know what you think.
0:20:43 > 0:20:48But we had the warmest welcome ever,
0:20:48 > 0:20:50and I think they're all crazy, there.
0:20:50 > 0:20:57For people to think that Ty Hafan is a morbid, sad place, they're wrong.
0:20:59 > 0:21:02- There we are.- Got it. Woo!
0:21:02 > 0:21:03What do you reckon, Kirst?
0:21:03 > 0:21:07We've had a really lovely welcome, haven't we?
0:21:07 > 0:21:11Because we've put our handprints on, we feel as if we're part of Ty Hafan.
0:21:11 > 0:21:14Our names are on the wall, our hand prints are on the wall.
0:21:14 > 0:21:18So, we're actually, officially, part of Ty Hafan now.
0:21:18 > 0:21:20Yeah!
0:21:30 > 0:21:33At home, the ringing of the bell from the girls' bedroom
0:21:33 > 0:21:36would herald the start of Lynn's day,
0:21:36 > 0:21:40a non-stop routine of ever-increasing care needs.
0:21:40 > 0:21:42I got to the stage where...
0:21:42 > 0:21:47when they ring the bell in the morning, I was dreading it.
0:21:51 > 0:21:53It shouldn't be like that, you know?
0:21:53 > 0:21:57Because I'm fighting against them, trying to get them up.
0:21:57 > 0:22:00I'm trying to get them in the chairs.
0:22:00 > 0:22:04Catherine, because I get stressed about it,
0:22:04 > 0:22:09she's getting distressed about it, where it's just making things worse.
0:22:09 > 0:22:11We're just like a vicious circle.
0:22:15 > 0:22:17Are you going to hold on with the other hand?
0:22:17 > 0:22:20This morning, for the first time in 17 years,
0:22:20 > 0:22:23Lynn is only an onlooker, as others care for her child.
0:22:26 > 0:22:28Is that OK?
0:22:28 > 0:22:30I'm confident in all the girls and everything,
0:22:30 > 0:22:33they've all been fantastic, but it's really hard
0:22:33 > 0:22:36because I feel as if, you know, I need to do it.
0:22:36 > 0:22:38It's really hard, just to...
0:22:39 > 0:22:41KIRSTY LAUGHS
0:22:42 > 0:22:43Don't laugh at me.
0:22:43 > 0:22:46Are you laughing because your mum's crying?
0:22:48 > 0:22:53It must be hard for you, Lynn, because you haven't had this kind of support before,
0:22:53 > 0:22:55so it must be hard to handle it.
0:22:58 > 0:23:04'I think Lynn really realises that the girls are deteriorating,'
0:23:04 > 0:23:09and I think she realises that time is really precious to her.
0:23:09 > 0:23:13We've talked about next year will be the 18th birthday,
0:23:13 > 0:23:18and she really would like to do a big party for them.
0:23:18 > 0:23:22She's said things like, "I hope they're well enough to appreciate it and enjoy it,"
0:23:22 > 0:23:24so I think she does understand...
0:23:26 > 0:23:29..you know, how ill they are and what the prognosis is.
0:23:34 > 0:23:36'It is a bittersweet day, today.'
0:23:36 > 0:23:41We celebrate his birthday, but deep down...
0:23:42 > 0:23:47..I don't like him having birthdays, because I'd like to keep him as he is now.
0:23:52 > 0:23:54Crazy women!
0:23:54 > 0:23:57It's Jack's 16th birthday party.
0:23:59 > 0:24:02'Oh, their eyes are goggling out in there.
0:24:03 > 0:24:07'He's one of the boys. He lives life to the full.'
0:24:07 > 0:24:12'He wants to do everything that normal teenagers do, and he just loves life.'
0:24:17 > 0:24:21Shirley from Ty Hafan deals with children with all sorts of illnesses.
0:24:21 > 0:24:24Tonight, amongst all the celebrating and dancing,
0:24:24 > 0:24:29there's a particular poignancy to the plight of the Duchenne boys.
0:24:29 > 0:24:35It's one of the hardest conditions that I work with, certainly,
0:24:35 > 0:24:38because they're cognitively aware of everything around them,
0:24:38 > 0:24:42and they're looking forward to life.
0:24:42 > 0:24:46Seeing Jack with some of the young boys that are from Ty Hafan
0:24:46 > 0:24:52in there now, they are so much more than their condition.
0:24:52 > 0:24:55'We missed the kiss!'
0:24:55 > 0:24:57'We're really happy today.'
0:24:57 > 0:25:01It's a birthday we didn't know if we'd be celebrating a couple of months ago,
0:25:01 > 0:25:07but Jack's doing really well, so we're going to celebrate and have a really good night.
0:25:07 > 0:25:09We have a very special birthday in the house tonight.
0:25:09 > 0:25:13This is Jack and he's turning 16 today.
0:25:13 > 0:25:16On the night of his 16th birthday,
0:25:16 > 0:25:19Jack can look back on a year where he beat death.
0:25:19 > 0:25:23Now he's living life, and doing it with a smile on his face.
0:25:23 > 0:25:25You wanted to come here tonight.
0:25:25 > 0:25:30You wanted to come here to celebrate your birthday tonight, because of the girls.
0:25:30 > 0:25:32Why don't you just say it, I'll move my lips!
0:25:32 > 0:25:34Ha-ha! "You say it, I'll move my lips!"
0:25:38 > 0:25:39Come here!
0:26:11 > 0:26:12They've had a fab weekend.
0:26:12 > 0:26:14They've really got to know all the staff,
0:26:14 > 0:26:18the staff have got to know them, and they really enjoyed it.
0:26:18 > 0:26:20It's been so lovely to spend time with them.
0:26:20 > 0:26:24'They've had their bubble bath, their pamper days,
0:26:24 > 0:26:27'they've chilled, Mum has chilled and it's been lovely.
0:26:27 > 0:26:31This is the diary of their stay in Ty Hafan.
0:26:31 > 0:26:35They've done all the little things, the pamper session and that.
0:26:35 > 0:26:38Just memories, really, for you to take home
0:26:38 > 0:26:40and to show everybody what you've done.
0:26:40 > 0:26:42Yes.
0:26:42 > 0:26:45I had a big shock yesterday morning.
0:26:45 > 0:26:48I got up, I actually slept, Saturday night, for nine hours.
0:26:48 > 0:26:51I haven't slept for nine hours for such a long...
0:26:51 > 0:26:53I don't know when I slept nine hours before.
0:26:53 > 0:26:59When I got up, I came down here, Cath was in her chair, ready,
0:26:59 > 0:27:03dressed, and I said, "I thought you were going to have a bath."
0:27:03 > 0:27:06She'd been in the bath and everything. I was so gobsmacked.
0:27:06 > 0:27:09I think they all saw the shock on my face.
0:27:09 > 0:27:12Definitely have to come back very soon.
0:27:12 > 0:27:14Even though the Fields family are heading home,
0:27:14 > 0:27:16they're not leaving Ty Hafan behind.
0:27:16 > 0:27:19Having taken the big step of asking for help,
0:27:19 > 0:27:23Kirsty and Catherine will always be part of the Ty Hafan family,
0:27:23 > 0:27:26whatever the future may bring.
0:27:26 > 0:27:29Didn't I say to you, these girls will come in and melt your hearts,
0:27:29 > 0:27:33- and you looked at me daft? Now can you see what I mean?- Yeah.
0:27:33 > 0:27:38It was nice knowing you, Kirst! See you September.
0:27:38 > 0:27:40- Don't, she'll stay here! - She'll never!
0:27:40 > 0:27:46When do you want me to come back for you? You don't want me to come back?
0:27:46 > 0:27:49OK, nice knowing you. Bye, then.
0:27:49 > 0:27:52Look! "Bye!"
0:27:52 > 0:27:54The time we're with these families are so...
0:27:55 > 0:27:58..intense and precious at the same time.
0:27:58 > 0:28:02You know when you're with a family and a child is particularly unwell...
0:28:03 > 0:28:07'..you realise how privileged you are to be doing it, because...
0:28:07 > 0:28:12'time is so precious. Time is not a luxury that these children in these families have.
0:28:12 > 0:28:14'They just don't have that luxury,
0:28:14 > 0:28:19'and for you to be welcomed into that young person's life,
0:28:19 > 0:28:23'and for them to be able to share their lives with you
0:28:23 > 0:28:26'is just pretty amazing, really.'
0:28:26 > 0:28:30- Oh!- Well done, girls.- Team effort.
0:28:37 > 0:28:39Well done, girls.
0:28:39 > 0:28:42I told you they'd melt your heart, you didn't believe me!
0:28:52 > 0:28:55Subtitles by Red Bee Media Ltd
0:28:55 > 0:28:58E-mail subtitling@bc.co.uk