Episode 2 Beautiful Lives


Episode 2

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This programme contains some scenes which some viewers may find upsetting

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On a beach in South Wales, where the waves lap the shores and the seagulls cry,

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children can be heard playing, singing and laughing merrily.

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This is Ty Hafan, a place where

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the families of children expected to die young

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learn to live life to the full.

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Butterflies are seen everywhere in Ty Hafan children's hospice,

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a metaphor for the short yet beautiful lives

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that the charity help to create for the children.

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When a child is so unwell that they're not expected

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to live into adulthood,

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they turn to Ty Hafan.

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

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The hospice helps over many years to fulfil every potential,

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and at the end of their lives,

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they are there to provide support, care and love.

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The philosophical wisdom of an inspirational teenager

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and the love of a parent protecting a child fighting cruel fate.

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These are the stories of humanity shining through

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in a time of adversity.

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I have a funny sense of humour!

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I like laughing!

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Jack Thomas' ambition is to get arrested.

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I'm always laughing.

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A children's hospice is not just a place where young people go to die.

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Ty Hafan is more than a building.

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The charity also works with families in their homes,

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and today they've have arranged for Bryce, a graffiti artist,

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to paint a wall in Jack's bedroom.

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Typical teenager - cannabis leaf and guns, and his name.

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His mum Jo has learned over the years that, with Jack,

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you just go with the flow.

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You want, like, a proper boy's room, don't you, a teenager's room.

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Yeah, like a boy's room.

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I just feel that he's 16,

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if he can't have it now, when can he have it?

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If we just try and cram in as much as we can, you know,

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while he's here, and he has what he wants, basically.

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I play games and watch movies and stuff. Yeah.

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With the mural in full flow, Bryce needs help

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with getting the gun right.

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Luckily, Chloe, Jack's sister,

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is on hand to model one of Jack's toy guns.

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All right, cool. Let's give that a go.

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Well, he's one of the funniest kids I've ever met.

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He's so dry. He's got a fantastic sense of humour.

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Do you want, like, a Russian manufactured gun

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or a Welsh manufactured?

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Do Welsh people make guns?

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He never moans, never moans.

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He could be in agony, and he don't moan, he gets on with it.

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He's just brilliant, really.

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We're so lucky that he's got such a good outlook on life,

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you know, it's to live.

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You know, and he lives it every day, to the best of his ability.

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You know like in James Bond, you know you're...

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Shirley Valentino of Ty Hafan has a strong relationship

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with Jack and his family, built over a decade.

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You kind of have to identify with, you know, with Jack,

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in a sense, he wants all the things

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that my son wants at this age.

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And yet you have to understand that, unlike my son,

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he's also dealing with the other side,

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he's also dealing with the condition.

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And he knows the end result of his condition is death...

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..and that, I guess, you're working on a knife edge all the time.

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Jack suffers from Duchenne muscular dystrophy,

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a particularly cruel, incurable genetic condition

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that progressively destroys the muscles in the bodies of boys.

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Difficulty walking at around three is the first sign.

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By the age of ten, they go off their feet and start using a wheelchair.

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Jack is now 15,

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but he's not expected to live beyond his early 20s.

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We don't really talk about the obvious.

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When Jack's ready to talk to me about it,

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obviously, I'll answer his questions and things.

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He knows, and I know that he knows,

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that he's going to have a short life,

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but we try not to think about that.

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We just... We just basically live for today,

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and I think if he looks at life like that, then we've got to.

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You know, we've got to be strong,

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because he's such a strong character.

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So, yeah, we just treasure him while we've got him.

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What do you think?

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-It's awesome.

-Ah, cool.

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Got your cannabis leaf in.

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Managed to squeeze the gun in a little bit.

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It's nice.

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Bones! Nice one, mate.

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-Thanks.

-Yeah, no worries.

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SHE CRIES

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I have pain all of the time.

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I find the idea of not having pain really weird.

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I have to write down my pain scores every day.

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And my average pain score is between a five and a seven.

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A lot of people don't believe that you can have that much pain

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and talk as much as I do, I think.

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BIRDSONG

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Amy-Claire Davies is in Ty Hafan for the weekend.

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It's the first time in four years the teenager's spent a few days

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away from her parents, who care for her around the clock.

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Oh, we're going for the just-got-out-of-bed look, are we?

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She suffers from a mysterious, agonizing condition

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in which her body's major functions have failed.

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To give her any standard of living,

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she goes to hospital for intense treatment every month.

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She relies on a complex medical regime that involves taking

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some of the strongest pain-relief drugs available.

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I could live to be 18, but I could live to be 62,

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because we don't know how it works.

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So I think I have a lot of hope, anyway.

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I mean, I'm not going down without a bit of a fight.

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Ty Hafan have invited local well-wishers

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to bring in their flash cars

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to let the children and their families have a close look.

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I really like the cars, because they're fast.

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Amy's stay is only possible because

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the staff have the specialist skills needed

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to take on the care role that her parents normally perform.

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APPLAUSE

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Thank you so much for my present! I love it!

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Kelly Ursell is usually her carer when she comes to stay at Ty Hafan,

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and they're as thick as thieves. Amy's put together the "Things to do before I kick the bucket list",

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and number 53 on that list is a ride in a Lamborghini.

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That's nice, innit? I'll have that on my Christmas list!

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Yeah, I was going to say 18th birthday! 17th birthday, even!

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She had a difficult night last night,

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and she can tend to be a bit tired the day after then, as well.

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But yeah, she has been looking forward to it,

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and she told me she wants to go in one.

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I'm not so sure if she should!

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I'm sure she will, she's not scared of anything, Amy.

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-Come on then, jump in.

-I don't know how I'm going to get out of it, mind.

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We'll figure that out when the time comes.

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Oh, it's amazing, mind.

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CAR REVS

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Despite the urge to wrap her up in cotton wool,

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Kelly knows that, for Amy to quench her thirst for life,

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she must be allowed to taste independence

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like any other girl her age.

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-Oh, that's amazing!

-All right, innit?

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Oh, it's stunning.

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-First time in a Lamborghini?

-First time.

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First time, ah, there we are.

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It's stunning.

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I'm looking at my watch, thinking, "Just bring her back in one piece!"

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I think the thing is with Amy, and this is truthfully now,

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with her condition, she's so unpredictable in how she can be,

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and within five minutes she can go

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from being Amy-Claire that you see getting in the Lamborghini

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to Amy-Claire being quite poorly and very distressed and upset.

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So, to just to have her out of your sight for five minutes

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and to know you're not there, and in that five minutes that could happen

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is a little bit... Leaves you on tenterhooks a little bit.

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I don't know how her mum and dad do it all the time.

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ENGINE ROARS

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That was amazing!

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-Fast, innit?

-Really fast.

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APPLAUSE

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Amazing.

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But your stomach was like...

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You left your stomach behind some of the time, but it was really good.

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And I'm just going to have to turn my tap off.

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I know, right in the middle of the conversation!

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I was getting a bit...

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More than a bit anxious, I think, waiting for her.

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We got a bit lost, going down one of the roads.

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Oh, my dinner started coming back up and everything,

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thinking, "Where is she?" I went running down there.

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But you enjoyed it, so it was worth it, wasn't it? Good, good.

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Tired now, though, aren't you? I can see, yeah.

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-Let's go inside for a bit of a chill.

-Yeah.

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The Ty Hafan staff deal with dozens of cases at any one time.

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But today, Shirley's had to drop everything,

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as a crisis has occurred.

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I got a phone call from Jack's mum, Jo,

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just to say that they were in the hospital

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and that he'd been admitted, and she was waiting for the results

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of his test, and the result was that he has cancer.

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Jack had not been feeling well for a few days.

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His parents thought it might be an infection,

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which isn't uncommon for a boy with Duchenne muscular dystrophy.

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However, it turned out to be much more serious.

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Doctors found a tumour which turned out to be testicular cancer.

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Jo has asked Shirley to be by her side.

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They're dealing with a life-and-death situation.

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Jack's going in for an operation that is high risk.

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Not because of the cancer because of the Duchenne muscular dystrophy

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and the diabetes have an added complication to the operation.

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As a parent, I can't imagine what that must be like,

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to have the knowledge that

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your child needs an operation

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but there's going to be a risk that he might not recover.

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Hello.

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On the ward, Jack's dealing with the news in his own inimitable fashion.

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-Same face, look!

-Smile, Jack!

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For mum Jo, who expected to have him with her for years yet,

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the news has come as a terrible blow.

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It just don't seem fair that he's got to go through

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any more than what he already has gone through.

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You know, his whole life has been a battle,

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and he's coped very well with all of that.

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But now, you know, this is something more worrying

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than anything else we've had to cope with.

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The family have got used to living with Duchenne,

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but it hasn't prepared them for the thought of losing Jack at only 15.

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Shirley's dealt with life-and-death situations on many occasions

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during her time at the hospice.

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Her experience, advice and emotional support will be an invaluable help

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to Jo during this difficult time.

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I've never really wanted to talk about end of life with Shirley,

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because Jack has always been so well,

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and we don't like to think about that.

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But now this has happened, you know, it's sort of made us...

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We need to talk about things like that and, you know,

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what we need to do and what we need to put in place and things.

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You know, just in case things were to go wrong.

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-Are you looking forward to putting the cap and gown on?

-What?

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-Your designer gown.

-Your designer gown.

-Oh, I don't mind.

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-You don't mind that?

-Be a bit breezy!

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It's important to me to pass exams because everybody does it, for one,

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and also because I do want to get a job in the future,

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and I want to have a good job, and a job that I enjoy doing.

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I don't just want to work in a supermarket checkout.

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Amy-Claire is usually too ill to attend school,

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so she has a few hours of home tuition every day.

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This month, she's going to have to sit her GCSE exams from her bedroom.

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She's expected to get A stars.

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Even though I might not have a future, I plan, like, I do.

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And even though I don't set, like, ridiculous long-term goals.

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Like, I tend to set sort of one-year, two-year goals.

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So a couple of years ago, it was, "Right, get GCSEs sit my exams and go to prom".

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So now I'm sort of nearing that, I'm sort of sitting here,

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thinking, "Right, I want to be 17".

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Even though, it's a bit of a random age to be honest.

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I didn't want to be 16 and I'm not that bothered about 18

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but I really want to be 17.

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And I do plan about moving out and having my own flat

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and doing a job that I really enjoy.

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And I think about things, I do want to get married and have a baby

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and I want to go to my friends' weddings

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and I want to do things like that, things that everyone else does.

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And I think even though I'm less likely to have that future,

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I probably plan more than my other friends would,

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just because I've had to think in more detail

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what would I really like to do.

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Parents Steve and Caroline have been told on many occasions

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not to expect Amy to live beyond her childhood

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but she keeps on defying the odds.

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Do we dare to hope for a future?

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Yeah.

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There are lots and lots of moments in lots and lots of days that we do.

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We were talking about Amy's future last night on the settee

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cos obviously we've got GCSEs and things.

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Steven hates talking about it at all because...

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it's like the acknowledgement that at some point,

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something is going to go belly-up, potentially.

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I don't feel like that any more.

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It took us a long, long time to come to the realisation

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that quality is far better than quantity.

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So for us...I want her to plan and talk about the future

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and have ambition because it improves her quality of life now.

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It's about what does she want to be, what does she want to do.

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And without any of that, you can't live a quality life.

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You can't be a real person if you've got no ambition,

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if you've got no interest, if you've got no focus.

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Today's the 11th of March, the day Jack has his operation.

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How do you feel, Jack?

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I don't know.

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Are you nervous?

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A little bit.

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A little bit nervous?

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Yeah.

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Jack's Duchenne and diabetes mean that any general aesthetic

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could cause fatal complications.

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Only a few months ago,

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one of Jack's friends with the same condition died whilst in theatre.

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He just takes everything, you know, in his stride.

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Everything goes above him but this has knocked him sideways.

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And he's angry. He feels, you know, why him?

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Jack's on his way, just going down to theatre.

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'You know, he's got a lot to put up with

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'and now he's been hit with the worst news you could ever be given.

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'It's just been a nightmare. It's been the worst week of our lives.

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'This has been harder than when he was diagnosed as a baby.'

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For now, Jack will be taken to theatre,

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and it's time for the family to say goodbye.

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I'm pooing my pants now.

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LAUGHTER

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You'll be fine.

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I'm doing my second English GCSE exam today.

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Oh, no!

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We literally just have to do just the basics on her GCSE days

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so we wake her two hours before her paper starts.

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She has a cup of tea and her breakfast

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and then we do all her meds

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and then she goes and does her bowel wash-out, which is her essential.

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And then we get clean pyjamas on, back into bed,

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then ready for the paper to start.

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Brilliant.

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So the larger print.

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Large print and yellow.

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It's quite stressful doing an exam but she's very, very aware now

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that any kind of strong emotion, doesn't matter what it is,

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any, like, strong anxiety,

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they'll just make her spasms 120 times more likely to happen

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and 120 times worse than they are.

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You'll be absolutely fine, Ame.

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You haven't missed a single bit of English work.

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Everything you've done, you've had an A or an A-star for. How could you possibly not be fine?

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Cos this is grammar. This isn't writing.

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Look, the time to worry is if you get unclassified more than once.

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And English is your first language.

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-Like you did.

-Yeah!

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I think it's really, really easy sometimes in our house

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cos we're positive and particularly because the way Amy's attitude is

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towards her illness and perhaps our attitude.

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Sometimes very, very easy to forget the moments that we've had

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where we've thought,

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"We're not going to bring her home from hospital this time.

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"She's going to get worse and we're not going to have her for much longer."

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And sometimes when she's in one of her moments

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or her bits where she's tootling along, I suppose is the best description,

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it's incredibly easy to forget how poorly she is.

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And the only way to describe it is you can go along and you can be driving in the car

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and it can not have crossed your mind all day

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and then suddenly, it crosses your mind

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and your stomach turns upside down and you feel sick.

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And you feel that horrible feeling because all we know

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is it's a cruel, horrible disease but we don't know what it is.

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Other people might be hoping for a miracle cure.

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We've gone past the point of the miracle cure.

0:21:080:21:11

It ain't here and it's not going to happen

0:21:110:21:13

and we got no intention of wasting energy on a miracle cure.

0:21:130:21:16

What we hope for is more good days than bad ones.

0:21:160:21:21

I think it's gone OK.

0:21:230:21:25

I know the second half has gone OK.

0:21:250:21:27

Not so sure about the first part, cos I was a bit bored, to be honest.

0:21:270:21:31

So I just got it finished, like, as quick as possible.

0:21:310:21:33

We went to leavers' assembly last week

0:21:350:21:38

and I remember it's not that long ago we thought we'd never, ever see her leave school - not ever.

0:21:380:21:43

And we sat in leavers' assembly absolutely sobbing.

0:21:430:21:46

Absolutely sobbing.

0:21:460:21:48

Not because she's leaving school but because it was a really, really, really amazing thing to achieve.

0:21:480:21:54

It was really incredible...

0:21:540:21:56

To watch someone to leave school...

0:22:000:22:04

..like her peers, really,

0:22:050:22:07

when actually you spent a long time thinking she's never going to do it.

0:22:070:22:11

And I think she does that to us a lot.

0:22:130:22:16

That's what I mean about life.

0:22:160:22:18

It would be a lot easier to say, "We won't bother with school.

0:22:180:22:21

"Why are we bothering with school? She's got no future".

0:22:210:22:24

She's got a future, she's got a huge future.

0:22:240:22:28

It's just not the future that everybody else has.

0:22:280:22:31

And it isn't the one that everybody wakes up in the morning

0:22:310:22:34

and the general Joe Public perceives as a future.

0:22:340:22:38

And I think Joe Public will find it very hard to understand

0:22:380:22:42

that you can have such a lust and a passion for life

0:22:420:22:46

when you've got all those...things to face.

0:22:460:22:50

But she does.

0:22:530:22:55

Having said their last goodbyes, Jack's parents Jo and Gary

0:22:590:23:03

have been suffering an agonising wait for over three hours.

0:23:030:23:06

Shirley from Ty Hafan has not left their side.

0:23:060:23:08

Just spoken to the consultant and the anaesthetist.

0:23:080:23:12

He's doing really well.

0:23:120:23:14

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

0:23:140:23:18

and he's breathing on his own.

0:23:180:23:21

So fantastic news.

0:23:210:23:22

That's so wonderful!

0:23:220:23:24

This is Jack, now, just in recovery.

0:23:330:23:35

Feeling a bit sick.

0:23:360:23:38

But he's doing so well.

0:23:400:23:41

Having pulled through, only time will tell

0:23:430:23:45

what scars the experience will leave on Jack and the family.

0:23:450:23:50

When they were taking Jack down, I went down with him

0:23:500:23:53

and I wanted to go in with him until he went to sleep.

0:23:530:23:57

It was the most horrendous feeling in the world to think

0:23:580:24:02

that I could've been saying goodbye to him for the last time.

0:24:020:24:06

When we first raise the thoughts of death

0:24:130:24:16

obviously it's really hard for the families.

0:24:160:24:18

The fact is that those, the parents are already upset

0:24:180:24:22

that they're already thinking all those thoughts.

0:24:220:24:24

But how do you... In my experience they've often said,

0:24:240:24:28

"How do we voice them?"

0:24:280:24:30

"We have these thoughts in our heads but how do we voice them?"

0:24:300:24:33

So, for us, we're able to help them

0:24:330:24:36

and give them space to voice those concerns.

0:24:360:24:41

In the coming weeks and months,

0:24:410:24:43

Shirley from Ty Hafan will work closely with the family

0:24:430:24:46

to help them come to terms with their feelings regarding death.

0:24:460:24:49

They've always known that Jack may only live a short life,

0:24:490:24:52

but the recent events have been a cruel reminder of the emotions

0:24:520:24:56

they'll have to face when the time comes.

0:24:560:24:59

I am scared about dying, but it's not so much about

0:25:050:25:08

the dying part, it's more about what I leave behind.

0:25:080:25:14

It's the people and things that you leave behind.

0:25:150:25:18

-I bet I look really serious.

-We can see everything.

-Oh, no...

0:25:180:25:23

'My Grandma says if you didn't laugh about it you'd be crying

0:25:230:25:26

'and I think that's the best way to be, make a joke about it.'

0:25:260:25:29

# It's Amy, Amy, Amy, in the morning.

0:25:290:25:32

# It's Amy, Amy, Amy in the night.

0:25:320:25:36

# It's Amy, Amy, Amy in the teatime.

0:25:360:25:39

# It's Amy, Amy, Amy, yes, it's Amy, Amy, Amy, yes,

0:25:390:25:42

# It's Amy, Amy, Amy all the time.

0:25:420:25:44

# It's Amy, Amy, Amy, Amy all the time. #

0:25:440:25:47

It's a tragic irony that it's her cruel illness that's given Amy

0:25:500:25:54

her unique perspective on life and death,

0:25:540:25:57

which has led to both her untameable lust for life

0:25:570:26:00

and a mature philosophy that defies her young age.

0:26:000:26:03

Though there may be no cure, for Amy, Steve and Caroline,

0:26:030:26:08

laughter is the best medicine.

0:26:080:26:11

I have one consultant, and when I was really ill about a year ago,

0:26:110:26:17

before I started on my treatment, I was a lot, lot worse.

0:26:170:26:23

And we went in and I was talking about it and I was saying,

0:26:230:26:27

"Now I've started having full-body spasms

0:26:270:26:30

"and I get really bad back spasms most days

0:26:300:26:32

"and I have this most days and this happens

0:26:320:26:34

"and I get really bad pain and my patch has gone up." But we were

0:26:340:26:38

just cracking jokes as we were saying it all the way through.

0:26:380:26:42

And, normally, he's quite eccentric,

0:26:420:26:44

he would be one of the doctors who'd be laughing

0:26:440:26:48

and cracking jokes as well and he actually turned around and said,

0:26:480:26:52

"I know this is your way of coping, by making it humourous,

0:26:530:26:57

"but, actually, it's not that funny."

0:26:570:27:00

What made you cry?

0:27:120:27:13

I was saying about Johann.

0:27:150:27:17

Yeah.

0:27:170:27:18

And what did he say?

0:27:190:27:21

He said, "We trivialize it."

0:27:220:27:24

"But actually what's happening is a bit of a shit deal."

0:27:260:27:29

And then he said, "Typical NHS, you can't find a tissue anywhere when you want one."

0:27:290:27:33

No. We had a loo roll.

0:27:330:27:37

A giant loo roll that was this big.

0:27:370:27:39

And even he cried.

0:27:420:27:44

He did cry. And I cried and you cried, cos it is a shit deal.

0:27:440:27:49

I'm really tired now.

0:27:520:27:54

Are you tired?

0:27:540:27:56

And it is a shit deal, but it's not a shit deal all the time, is it?

0:27:560:28:00

-I don't think it's a shit deal most of the time.

-No.

0:28:000:28:04

What do you think it is, then?

0:28:050:28:07

I said to him, "I'm quite lucky."

0:28:080:28:12

-Why, coz you got me? I know, Ame.

-Cos you're magic.

0:28:120:28:16

Why?

0:28:170:28:18

Why do you think you're lucky?

0:28:190:28:21

Cos I said, "I wouldn't have done all, like, those amazing things."

0:28:210:28:27

-And I wouldn't.

-Have met all the amazing people?

-Exactly.

0:28:270:28:31

-I wouldn't know how much, my friends and family.

-You'd be like all the other 16-year-olds.

0:28:310:28:35

Worrying about my mascara, which is lucky I don't wear on camera,

0:28:350:28:40

because I'd have it down here by now.

0:28:400:28:42

Subtitles by Red Bee Media Ltd

0:29:000:29:03

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0:29:030:29:06

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