Episode 3 Beautiful Lives

On a rocky beach in South Wales,

where the waves lap the shores and the seagulls cry,

children can be heard playing, singing and laughing merrily.

This is Ty Hafan,

a place where the families of children expected to die young

learn to live life to the full.

Butterflies are seen everywhere in Ty Hafan Children's Hospice,

a metaphor for the short yet beautiful lives

that the charity helped to create for the children.

When a child is so unwell that they're not expected to live into adulthood,

they turn to Ty Hafan.

Referred in a time of need, they're in search of care and support.

The hospice helps, often over many years,

to fulfil every potential

and at the end of their lives,

they are there to provide support, care and love.

Fab!

Twins whose beautiful smiles defy the cruelty

of their unique condition,

and a teenage boy laughing in the face of his illness.

These are stories of humanity shining through

in a time of adversity.

COMPUTERISED SPEECH:

COMPUTERISED SPEECH:

Kirstie and Catherine Fields from Llanelli are obsessed

with clothes, music and boy bands,

all the things teenage girls love.

Their identical genes have given them both their beautiful smiles,

bubbly characters and a special shared life together.

But those same genes have sentenced them to the same fate,

a unique disease that bears their name.

Fields condition is a degenerative neurological disease

that has gradually eaten away at their muscle control.

TOGETHER: # Santa's coming to town

# He sees you when you're sleeping

# He knows when you're awake... #

The twins were confined to wheelchairs at eight years old.

And by now, only 17, they must rely on a machine to speak for them.

COMPUTERISED SPEECH:

COMPUTERISED SPEECH:

Recently there's been a worrying deterioration in the girls' condition.

They've been referred to the hospice,

but as the word often evokes fear,

Hayley Mason from Ty Hafan has come to see them in school

and try to dispel their worries.

Hello, bach.

Syt wyt ti?

Da iawn?

Catherine... Hello, bach.

Da iawn?

'If they were to look on the web about, "What is a hospice?"

it tells them that perhaps it's a quiet place where adults go to die.

So teenagers don't really understand what a hospice is.

So understandably they're a bit anxious.

'But I think once they've been, and they've had a look around and met one or two of us,

'they get a better picture of it and they understand

'that it's a place where they can come and relax, have a bit of fun,

'recharge their batteries, have a break from mum and dad

'and have a little holiday with other teenagers

'that are going through the same as them.'

Their mum, Lyn, has seen Catherine and Kristie's care needs grow

as the girls have grown.

Hayley's going home with them to learn more about their lives

and get a clearer picture of their needs.

They've got patterns for Parkinson's,

they have got patterns for cerebral palsy and other things,

but they haven't got the whole pattern for anything.

Their condition was actually named after them

because nobody has seen anything like it.

But what does it do for us? It doesn't help us.

That's just a name, because where we've seen

so many different consultants and doctors

and we've been to different hospitals, everybody's dumbfounded.

One professor told us, it's like looking into a crystal ball,

nobody can tell you what's going to happen tomorrow because nobody knows.

Who snores the most?

'The girls are amazing really. They are so funny.

'But they've both got their own personalities which is really nice.'

They're just amazing, beautiful girls.

And it's really lovely cos you look at them now,

they want to wear their fashionable clothes,

they want their make-up and hair done right,

and why shouldn't they?

They're just the same as any other teenager in that respect.

But they're just amazingly beautiful, funny girls.

I love them already and I've only just met them.

Who chooses the DVD out of you?

Do you always agree or do you argue? Have you got a favourite?

Any one?

They like everything. They like the Disney ones...

-girly chick flicks.

-Cool.

'Lynn is just incredible, isn't she?'

The way she copes.

She doesn't have one daughter...

that's ill, she has two.

The way she copes with that is just remarkable.

I take my hat off to her.

And I think she tries to get through each day as best she can

and tries to keep a positive attitude

but you can see it's raw for her and that she's struggling.

They're going to be 17 next week

and we're at the stage now where...

..they've got to have help with everything.

They have problems lifting their arms...

cos there's an ongoing deterioration.

Going back when they were 11, 12,

they could still dress themselves independently and things,

with a little help, obviously, but most things they were still doing.

We're at the stage now where they can't even turn over in bed themselves.

I feel as if I should be doing everything because I'm their mother.

But...

because we've got to the stage where I'm struggling

and the hardest thing I had to do was ask for help.

They don't see themselves as disabled.

They see themselves the same as what all their friends are.

I think that is the hardest part because...

..their dignity, everything, you know?

But they've been very, very good

and very understanding about everything.

They know that we can't go on as we are.

We've really, really got to have help.

When families turn to a hospice,

they often don't know what to expect.

Where medicine offers no cure, Ty Hafan is a sanctuary.

They help families from all over South Wales in many different ways.

One major condition that plays a large part in the daily life of a hospice

is Duchenne muscular dystrophy, a cruel incurable genetic condition

that progressively destroys the muscles in the bodies of boys.

However, this doesn't stop teenagers like Jack Thomas

who are often the life and soul of the party at Ty Hafan.

It was Jack's idea.

-It wasn't.

-It was!

It was your idea.

SHE YELPS

It's a sad truth that Duchenne boys like Jack

aren't expected to live far into adulthood.

And as if that wasn't enough of a tragedy,

fate recently played another cruel trick on Jack and his family.

Hi.

A few days ago, Jack was told that he had testicular cancer

and would need an operation in hospital...

news he took in his own inimitable fashion.

I've got sweaty balls now.

When I wake up, I'll have sweaty ball.

Jack's operation took a fear-filled three hours.

I've just spoken to the consultant, and the anaesthetist,

he's doing really well.

The tumour was contained, so they were able to remove it all

and he's breathing on his own. So fantastic news.

Mum Jo has always known that Jack will only live a short life.

But this doesn't lessen the emotional strain

of having confronted the fear of his death at only 15.

Having helped the family through a traumatic few days,

Shirley Valentino of Ty Hafan is now encouraging them

to talk about their experience.

Jack's recovering but it's soon clear

it's not just his body that's been left scarred.

He's reluctant to talk.

-You would say if you were scared, Jack?

-Yeah.

Do you worry about your parents, Jack?

-I don't know.

-You don't know?

No.

I think you do, don't you?

I don't know.

I think you worry about us cos that's why you don't tell us much, isn't it?

You try and protect us.

You don't need to do that, do you?

Cos we protect you.

No.

No?

SHE CHUCKLES

Jo is Jack's rock but Shirley also has an important part to play.

I guess it's about for her to know there's someone for her, and for

her to lean on me, and that it's kind of a holding position, holding those

high emotions, for Jo, because she's trying to hold them for Jack.

There are times when she's really, really upset,

but that's not what she wants to show Jack, because what she wants

to show Jack is that she's confident everything's going to be OK.

Like any mum, she wants to say to her son, "Everything's going to be OK."

Where, she sometimes might not feel that.

Today I'm doing something that I don't get to do very often.

I've come shopping with Catherine and Kirsty,

to get to know them a little bit more,

because when I was speaking to their mother, the first time I saw her,

she said if I really wanted to meet them and really wanted to get to know them,

I need to come shopping with them, because that's what they love to do.

The twins have been really excited about today.

It's a girls' day out with Hayley, mum and their friend Nicky.

As well as shopping, they're going for a meal

and to see one of their favourite pop stars in concert.

Over recent weeks, Kirsty has been showing signs of deterioration,

and has started having brain seizures, as well as painful muscle spasms.

Her strong medication makes her drowsy, and today

she's been reluctant to take her drugs.

Come the afternoon, she's struggling.

She says they hurt so that's not a good thing.

She's in a bit of pain with them. She can sense they're coming,

and she gets a little bit scared and she needs a lot of

reassurance around that, and it's been heartbreaking to see her go

through it really, because it's kind of scary for her.

I think she's had about 16 of them, so we weren't going to come today,

but Kirsty as she is, she's not going to miss out on a shopping trip,

and a day out in Cardiff.

She's trying to put a brave face on and carry on.

She doesn't want to cry because she doesn't want to spoil her make up.

But it is difficult, you know. It just overwhelms you sometimes.

As the day goes on, Kirsty's issues continue.

In the restaurant she has an upsetting seizure,

but through it all, she continues to smile bravely.

They're an inspiration to us, because they've had to go through so much.

I know we've had to go through it, but it's them it's happening to,

and through everything that they've gone through, they just keep smiling.

Today has been all about building bonds with the girls.

But for Hayley, on a personal level, it's a reminder that working

with life-limited children and young people brings its own dangers.

Because of their age and the way they dress and the way they are,

I used to work with another family that had two daughters,

that sadly died, and it just reminds me of being with them,

and of what I went through with them, emotionally.

So as soon as I see the girls, I can feel myself filling up, because I just...

I almost don't want to do it.

Because it just takes me back to where I was,

when I worked with these other girls and when we lost them.

But then I'm so glad I did take them on, because they're just so amazing.

They are just beautiful, beautiful girls,

and they're going to break my heart, put it that way.

They do sell diabetic chocolate.

Shirley has brought her colleague Paul Fisher

to see Jack after his op.

Conned his mum into a brand-new hoodie,

saying that he's a diabetic and can't have Easter eggs.

Tragic!

Ta-ra, Jack. Behave.

I think you should give Mum a kiss before you leave.

Go on, chase after him! Go on, embarrass him!

Give me a kiss, darling.

THEY LAUGH

She's evil.

Don't come back with an ASBO!

Over the years, as part of the Ty Hafan staff,

Paul has spent a lot of time with Jack.

If he wants to talk about his recent scare, he may well open up to Paul.

Showing everyone your scar.

-Is that a cool thing, having a scar?

-I don't know.

Be a good chat-up line, though, wouldn't it?

"Do you want to see my scar?"

Shall we try it?

Want to see my scar?

THEY LAUGH

'I don't think Jack puts a brave face on,

'I think that's just Jack anyway.

'He just gets on with it

'and doesn't really think about the issues and the problems.

'He might for a split second,

'but then will just take it in his stride

'and move on to the next obstacle that comes up in his way.'

-So you're lot happier now?

-Yeah. Happier.

I don't really know how I feel, really.

Right. Were you feeling angry before?

Oh yeah, I thought I was. I wasn't feeling happy.

-Upset?

-Yeah, a little bit.

-I haven't been scared like that for ages.

-Yeah?

Yeah.

Well, I couldn't do... Well, I would have been scared, put it that way.

-Yeah. Who wouldn't, though?

-Yeah.

I think my mum was more scared, though.

-Mums always are, aren't they?

-Yeah.

-Mums always worry.

-Yeah.

Did you speak to Mum and Dad about it?

No, I don't really speak to them about it.

-How come?

-I don't know.

-You try and deal with it yourself?

-Yeah.

Most of the time I do.

Yeah, I don't get it. I don't ask, tell them or nothing.

I'm not sure what my mum's going through, really.

She bottles up, really, I think.

-She'll be strong, though, for you.

-Yeah.

Jack's concerns about his mum

are all too evident upon their return to the house.

Jo has collapsed. It seems the constant worry has taken its toll.

-I guess this is what we don't see of you sometimes.

-Yeah.

-The Jo that doesn't cope well.

-Yeah.

-We see the Jo that copes.

'What we see on the outside is Jo trying to cope all the time

'with Jack's condition and illness

'and trying to put a brave face on it.

'What we don't see is the Jo who's quite ill,

'and she's having these collapses,

'which are becoming more and more frequent,

'and that's difficult.

'And it's about seeing the private and public face of a parent, I guess.

'The parent wants to show all the time that they're coping,

'when underneath it, they're not, really.

'And who, as a parent, wants to admit they can't cope any more,

'physically and mentally?

'It's really hard. Really difficult.'

They'll be glad to put this difficult period behind them.

For now, all the family can do is look forward to happier times

at Jack's upcoming 16th birthday.

See you later. See you later, Jack.

-Bye, guys, take care. See you later.

-Ta-ra.

THEY LAUGH

'It's first time that they've had any kind of care on this level,

'from anybody other than their mum,

'so there's a bit of anxiety over that.

'I think 50% Mum is anxious about sharing them,

'and 50% of it is the girls.'

Can I have a cwtch? Oh, fab.

The Fields twins' first stay at the hospice is all planned.

There'll be takeaways, videos, and endless pampering.

What we're going to do tonight

is put your hand prints on the walls, girls, OK?

Hundreds of children have left their mark here over the years,

and in many different ways.

The walls are a gallery of the history of all the children,

families, parents and friends who have stayed here,

who together make up the Ty Hafan family.

Everybody that comes to Ty Hafan, every child and family that comes,

have their hand prints put on the wall.

Today, we're going to do the Fields twins, and Mum and Dad.

BOTTLE SQUELCHES

That is not me!

-Excuse you!

-They're all laughing!

What about you, Kirst, do I need to do other colours?

Yeah, I knew you were going to say that. What colour?

'When we first heard Ty Hafan, obviously I knew Ty Hafan was

'a hospice for children, but I didn't know a lot about it.'

And you think, "Oh, Ty Hafan," you think...

You know what you think.

But we had the warmest welcome ever,

and I think they're all crazy, there.

For people to think that Ty Hafan is a morbid, sad place, they're wrong.

-There we are.

-Got it. Woo!

What do you reckon, Kirst?

We've had a really lovely welcome, haven't we?

Because we've put our handprints on, we feel as if we're part of Ty Hafan.

Our names are on the wall, our hand prints are on the wall.

So, we're actually, officially, part of Ty Hafan now.

Yeah!

At home, the ringing of the bell from the girls' bedroom

would herald the start of Lynn's day,

a non-stop routine of ever-increasing care needs.

I got to the stage where...

when they ring the bell in the morning, I was dreading it.

It shouldn't be like that, you know?

Because I'm fighting against them, trying to get them up.

I'm trying to get them in the chairs.

Catherine, because I get stressed about it,

she's getting distressed about it, where it's just making things worse.

We're just like a vicious circle.

Are you going to hold on with the other hand?

This morning, for the first time in 17 years,

Lynn is only an onlooker, as others care for her child.

Is that OK?

I'm confident in all the girls and everything,

they've all been fantastic, but it's really hard

because I feel as if, you know, I need to do it.

It's really hard, just to...

KIRSTY LAUGHS

Don't laugh at me.

Are you laughing because your mum's crying?

It must be hard for you, Lynn, because you haven't had this kind of support before,

so it must be hard to handle it.

'I think Lynn really realises that the girls are deteriorating,'

and I think she realises that time is really precious to her.

We've talked about next year will be the 18th birthday,

and she really would like to do a big party for them.

She's said things like, "I hope they're well enough to appreciate it and enjoy it,"

so I think she does understand...

..you know, how ill they are and what the prognosis is.

'It is a bittersweet day, today.'

We celebrate his birthday, but deep down...

..I don't like him having birthdays, because I'd like to keep him as he is now.

Crazy women!

It's Jack's 16th birthday party.

'Oh, their eyes are goggling out in there.

'He's one of the boys. He lives life to the full.'

'He wants to do everything that normal teenagers do, and he just loves life.'

Shirley from Ty Hafan deals with children with all sorts of illnesses.

Tonight, amongst all the celebrating and dancing,

there's a particular poignancy to the plight of the Duchenne boys.

It's one of the hardest conditions that I work with, certainly,

because they're cognitively aware of everything around them,

and they're looking forward to life.

Seeing Jack with some of the young boys that are from Ty Hafan

in there now, they are so much more than their condition.

'We missed the kiss!'

'We're really happy today.'

It's a birthday we didn't know if we'd be celebrating a couple of months ago,

but Jack's doing really well, so we're going to celebrate and have a really good night.

We have a very special birthday in the house tonight.

This is Jack and he's turning 16 today.

On the night of his 16th birthday,

Jack can look back on a year where he beat death.

Now he's living life, and doing it with a smile on his face.

You wanted to come here tonight.

You wanted to come here to celebrate your birthday tonight, because of the girls.

Why don't you just say it, I'll move my lips!

Ha-ha! "You say it, I'll move my lips!"

Come here!

They've had a fab weekend.

They've really got to know all the staff,

the staff have got to know them, and they really enjoyed it.

It's been so lovely to spend time with them.

'They've had their bubble bath, their pamper days,

'they've chilled, Mum has chilled and it's been lovely.

This is the diary of their stay in Ty Hafan.

They've done all the little things, the pamper session and that.

Just memories, really, for you to take home

and to show everybody what you've done.

Yes.

I had a big shock yesterday morning.

I got up, I actually slept, Saturday night, for nine hours.

I haven't slept for nine hours for such a long...

I don't know when I slept nine hours before.

When I got up, I came down here, Cath was in her chair, ready,

dressed, and I said, "I thought you were going to have a bath."

She'd been in the bath and everything. I was so gobsmacked.

I think they all saw the shock on my face.

Definitely have to come back very soon.

Even though the Fields family are heading home,

they're not leaving Ty Hafan behind.

Having taken the big step of asking for help,

Kirsty and Catherine will always be part of the Ty Hafan family,

whatever the future may bring.

Didn't I say to you, these girls will come in and melt your hearts,

-and you looked at me daft? Now can you see what I mean?

-Yeah.

It was nice knowing you, Kirst! See you September.

-Don't, she'll stay here!

-She'll never!

When do you want me to come back for you? You don't want me to come back?

OK, nice knowing you. Bye, then.

Look! "Bye!"

The time we're with these families are so...

..intense and precious at the same time.

You know when you're with a family and a child is particularly unwell...

'..you realise how privileged you are to be doing it, because...

'time is so precious. Time is not a luxury that these children in these families have.

'They just don't have that luxury,

'and for you to be welcomed into that young person's life,

'and for them to be able to share their lives with you

'is just pretty amazing, really.'

-Oh!

-Well done, girls.

-Team effort.

Well done, girls.

I told you they'd melt your heart, you didn't believe me!

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