0:00:02 > 0:00:05This programme contains some scenes which some viewers may find upsetting
0:00:05 > 0:00:09On a beach in South Wales, where the waves lap the shores and the seagulls cry,
0:00:09 > 0:00:12children can be heard playing, singing and laughing merrily.
0:00:12 > 0:00:15This is Ty Hafan, a place where
0:00:15 > 0:00:18the families of children expected to die young
0:00:18 > 0:00:19learn to live life to the full.
0:00:20 > 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 > 0:00:29that the charity help to create for the children.
0:00:33 > 0:00:36When a child is so unwell that they're not expected
0:00:36 > 0:00:37to live into adulthood,
0:00:37 > 0:00:38they turn to Ty Hafan.
0:00:38 > 0:00:42Referred in a time of need, they're in search of care and support.
0:00:45 > 0:00:48The hospice helps over many years to 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.
0:00:59 > 0:01:02The philosophical wisdom of an inspirational teenager
0:01:02 > 0:01:07and the love of a parent protecting a child fighting cruel fate.
0:01:07 > 0:01:10These are the stories of humanity shining through
0:01:10 > 0:01:11in a time of adversity.
0:01:23 > 0:01:26I have a funny sense of humour!
0:01:27 > 0:01:28I like laughing!
0:01:28 > 0:01:31Jack Thomas' ambition is to get arrested.
0:01:31 > 0:01:33I'm always laughing.
0:01:33 > 0:01:38A children's hospice is not just a place where young people go to die.
0:01:39 > 0:01:41Ty Hafan is more than a building.
0:01:41 > 0:01:44The charity also works with families in their homes,
0:01:44 > 0:01:48and today they've have arranged for Bryce, a graffiti artist,
0:01:48 > 0:01:50to paint a wall in Jack's bedroom.
0:01:50 > 0:01:56Typical teenager - cannabis leaf and guns, and his name.
0:01:57 > 0:02:01His mum Jo has learned over the years that, with Jack,
0:02:01 > 0:02:02you just go with the flow.
0:02:06 > 0:02:10You want, like, a proper boy's room, don't you, a teenager's room.
0:02:10 > 0:02:12Yeah, like a boy's room.
0:02:12 > 0:02:14I just feel that he's 16,
0:02:14 > 0:02:17if he can't have it now, when can he have it?
0:02:17 > 0:02:20If we just try and cram in as much as we can, you know,
0:02:20 > 0:02:24while he's here, and he has what he wants, basically.
0:02:24 > 0:02:31I play games and watch movies and stuff. Yeah.
0:02:33 > 0:02:35With the mural in full flow, Bryce needs help
0:02:35 > 0:02:37with getting the gun right.
0:02:37 > 0:02:39Luckily, Chloe, Jack's sister,
0:02:39 > 0:02:43is on hand to model one of Jack's toy guns.
0:02:43 > 0:02:45All right, cool. Let's give that a go.
0:02:47 > 0:02:50Well, he's one of the funniest kids I've ever met.
0:02:50 > 0:02:54He's so dry. He's got a fantastic sense of humour.
0:02:54 > 0:02:57Do you want, like, a Russian manufactured gun
0:02:57 > 0:02:59or a Welsh manufactured?
0:03:00 > 0:03:02Do Welsh people make guns?
0:03:02 > 0:03:05He never moans, never moans.
0:03:05 > 0:03:08He could be in agony, and he don't moan, he gets on with it.
0:03:11 > 0:03:13He's just brilliant, really.
0:03:13 > 0:03:17We're so lucky that he's got such a good outlook on life,
0:03:17 > 0:03:20you know, it's to live.
0:03:20 > 0:03:24You know, and he lives it every day, to the best of his ability.
0:03:24 > 0:03:27You know like in James Bond, you know you're...
0:03:27 > 0:03:31Shirley Valentino of Ty Hafan has a strong relationship
0:03:31 > 0:03:34with Jack and his family, built over a decade.
0:03:34 > 0:03:39You kind of have to identify with, you know, with Jack,
0:03:39 > 0:03:43in a sense, he wants all the things
0:03:43 > 0:03:45that my son wants at this age.
0:03:45 > 0:03:50And yet you have to understand that, unlike my son,
0:03:50 > 0:03:52he's also dealing with the other side,
0:03:52 > 0:03:55he's also dealing with the condition.
0:03:55 > 0:03:59And he knows the end result of his condition is death...
0:04:00 > 0:04:07..and that, I guess, you're working on a knife edge all the time.
0:04:10 > 0:04:13Jack suffers from Duchenne muscular dystrophy,
0:04:13 > 0:04:16a particularly cruel, incurable genetic condition
0:04:16 > 0:04:19that progressively destroys the muscles in the bodies of boys.
0:04:20 > 0:04:23Difficulty walking at around three is the first sign.
0:04:23 > 0:04:27By the age of ten, they go off their feet and start using a wheelchair.
0:04:27 > 0:04:28Jack is now 15,
0:04:28 > 0:04:32but he's not expected to live beyond his early 20s.
0:04:34 > 0:04:38We don't really talk about the obvious.
0:04:41 > 0:04:43When Jack's ready to talk to me about it,
0:04:43 > 0:04:46obviously, I'll answer his questions and things.
0:04:49 > 0:04:53He knows, and I know that he knows,
0:04:53 > 0:04:57that he's going to have a short life,
0:04:57 > 0:04:59but we try not to think about that.
0:04:59 > 0:05:04We just... We just basically live for today,
0:05:04 > 0:05:11and I think if he looks at life like that, then we've got to.
0:05:11 > 0:05:12You know, we've got to be strong,
0:05:12 > 0:05:15because he's such a strong character.
0:05:16 > 0:05:22So, yeah, we just treasure him while we've got him.
0:05:22 > 0:05:24What do you think?
0:05:24 > 0:05:26- It's awesome.- Ah, cool.
0:05:28 > 0:05:30Got your cannabis leaf in.
0:05:30 > 0:05:33Managed to squeeze the gun in a little bit.
0:05:33 > 0:05:35It's nice.
0:05:35 > 0:05:37Bones! Nice one, mate.
0:05:38 > 0:05:40- Thanks.- Yeah, no worries.
0:05:44 > 0:05:48SHE CRIES
0:05:48 > 0:05:51I have pain all of the time.
0:05:51 > 0:05:54I find the idea of not having pain really weird.
0:05:54 > 0:05:57I have to write down my pain scores every day.
0:05:57 > 0:06:00And my average pain score is between a five and a seven.
0:06:02 > 0:06:05A lot of people don't believe that you can have that much pain
0:06:05 > 0:06:08and talk as much as I do, I think.
0:06:08 > 0:06:12BIRDSONG
0:06:12 > 0:06:15Amy-Claire Davies is in Ty Hafan for the weekend.
0:06:15 > 0:06:19It's the first time in four years the teenager's spent a few days
0:06:19 > 0:06:22away from her parents, who care for her around the clock.
0:06:22 > 0:06:25Oh, we're going for the just-got-out-of-bed look, are we?
0:06:25 > 0:06:29She suffers from a mysterious, agonizing condition
0:06:29 > 0:06:31in which her body's major functions have failed.
0:06:31 > 0:06:33To give her any standard of living,
0:06:33 > 0:06:37she goes to hospital for intense treatment every month.
0:06:37 > 0:06:40She relies on a complex medical regime that involves taking
0:06:40 > 0:06:43some of the strongest pain-relief drugs available.
0:06:43 > 0:06:50I could live to be 18, but I could live to be 62,
0:06:50 > 0:06:53because we don't know how it works.
0:06:55 > 0:06:59So I think I have a lot of hope, anyway.
0:06:59 > 0:07:02I mean, I'm not going down without a bit of a fight.
0:07:13 > 0:07:15Ty Hafan have invited local well-wishers
0:07:15 > 0:07:16to bring in their flash cars
0:07:16 > 0:07:19to let the children and their families have a close look.
0:07:19 > 0:07:22I really like the cars, because they're fast.
0:07:26 > 0:07:28Amy's stay is only possible because
0:07:28 > 0:07:30the staff have the specialist skills needed
0:07:30 > 0:07:33to take on the care role that her parents normally perform.
0:07:33 > 0:07:35APPLAUSE
0:07:35 > 0:07:38Thank you so much for my present! I love it!
0:07:39 > 0:07:43Kelly Ursell is usually her carer when she comes to stay at Ty Hafan,
0:07:43 > 0:07:48and they're as thick as thieves. Amy's put together the "Things to do before I kick the bucket list",
0:07:48 > 0:07:52and number 53 on that list is a ride in a Lamborghini.
0:07:52 > 0:07:56That's nice, innit? I'll have that on my Christmas list!
0:07:56 > 0:08:00Yeah, I was going to say 18th birthday! 17th birthday, even!
0:08:01 > 0:08:04She had a difficult night last night,
0:08:04 > 0:08:08and she can tend to be a bit tired the day after then, as well.
0:08:08 > 0:08:10But yeah, she has been looking forward to it,
0:08:10 > 0:08:15and she told me she wants to go in one.
0:08:15 > 0:08:17I'm not so sure if she should!
0:08:17 > 0:08:20I'm sure she will, she's not scared of anything, Amy.
0:08:20 > 0:08:23- Come on then, jump in.- I don't know how I'm going to get out of it, mind.
0:08:23 > 0:08:25We'll figure that out when the time comes.
0:08:25 > 0:08:27Oh, it's amazing, mind.
0:08:31 > 0:08:33CAR REVS
0:08:34 > 0:08:37Despite the urge to wrap her up in cotton wool,
0:08:37 > 0:08:40Kelly knows that, for Amy to quench her thirst for life,
0:08:40 > 0:08:42she must be allowed to taste independence
0:08:42 > 0:08:45like any other girl her age.
0:08:45 > 0:08:48- Oh, that's amazing!- All right, innit?
0:08:48 > 0:08:49Oh, it's stunning.
0:08:49 > 0:08:51- First time in a Lamborghini? - First time.
0:08:51 > 0:08:53First time, ah, there we are.
0:08:53 > 0:08:55It's stunning.
0:08:56 > 0:09:00I'm looking at my watch, thinking, "Just bring her back in one piece!"
0:09:02 > 0:09:07I think the thing is with Amy, and this is truthfully now,
0:09:07 > 0:09:11with her condition, she's so unpredictable in how she can be,
0:09:11 > 0:09:13and within five minutes she can go
0:09:13 > 0:09:16from being Amy-Claire that you see getting in the Lamborghini
0:09:16 > 0:09:20to Amy-Claire being quite poorly and very distressed and upset.
0:09:20 > 0:09:24So, to just to have her out of your sight for five minutes
0:09:24 > 0:09:27and to know you're not there, and in that five minutes that could happen
0:09:27 > 0:09:31is a little bit... Leaves you on tenterhooks a little bit.
0:09:31 > 0:09:33I don't know how her mum and dad do it all the time.
0:09:33 > 0:09:36ENGINE ROARS
0:09:45 > 0:09:47That was amazing!
0:09:47 > 0:09:49- Fast, innit?- Really fast.
0:09:53 > 0:09:55APPLAUSE
0:09:55 > 0:09:56Amazing.
0:09:56 > 0:09:58But your stomach was like...
0:09:58 > 0:10:03You left your stomach behind some of the time, but it was really good.
0:10:03 > 0:10:06And I'm just going to have to turn my tap off.
0:10:07 > 0:10:10I know, right in the middle of the conversation!
0:10:10 > 0:10:11I was getting a bit...
0:10:11 > 0:10:14More than a bit anxious, I think, waiting for her.
0:10:14 > 0:10:16We got a bit lost, going down one of the roads.
0:10:16 > 0:10:19Oh, my dinner started coming back up and everything,
0:10:19 > 0:10:21thinking, "Where is she?" I went running down there.
0:10:22 > 0:10:26But you enjoyed it, so it was worth it, wasn't it? Good, good.
0:10:26 > 0:10:29Tired now, though, aren't you? I can see, yeah.
0:10:30 > 0:10:32- Let's go inside for a bit of a chill.- Yeah.
0:10:41 > 0:10:44The Ty Hafan staff deal with dozens of cases at any one time.
0:10:47 > 0:10:49But today, Shirley's had to drop everything,
0:10:49 > 0:10:51as a crisis has occurred.
0:10:52 > 0:10:54I got a phone call from Jack's mum, Jo,
0:10:54 > 0:10:57just to say that they were in the hospital
0:10:57 > 0:11:01and that he'd been admitted, and she was waiting for the results
0:11:01 > 0:11:04of his test, and the result was that he has cancer.
0:11:08 > 0:11:11Jack had not been feeling well for a few days.
0:11:11 > 0:11:14His parents thought it might be an infection,
0:11:14 > 0:11:17which isn't uncommon for a boy with Duchenne muscular dystrophy.
0:11:17 > 0:11:20However, it turned out to be much more serious.
0:11:20 > 0:11:24Doctors found a tumour which turned out to be testicular cancer.
0:11:25 > 0:11:28Jo has asked Shirley to be by her side.
0:11:28 > 0:11:32They're dealing with a life-and-death situation.
0:11:32 > 0:11:37Jack's going in for an operation that is high risk.
0:11:37 > 0:11:41Not because of the cancer because of the Duchenne muscular dystrophy
0:11:41 > 0:11:49and the diabetes have an added complication to the operation.
0:11:49 > 0:11:53As a parent, I can't imagine what that must be like,
0:11:53 > 0:11:58to have the knowledge that
0:11:58 > 0:12:04your child needs an operation
0:12:04 > 0:12:07but there's going to be a risk that he might not recover.
0:12:15 > 0:12:16Hello.
0:12:20 > 0:12:24On the ward, Jack's dealing with the news in his own inimitable fashion.
0:12:26 > 0:12:28- Same face, look!- Smile, Jack!
0:12:29 > 0:12:33For mum Jo, who expected to have him with her for years yet,
0:12:33 > 0:12:34the news has come as a terrible blow.
0:12:36 > 0:12:39It just don't seem fair that he's got to go through
0:12:39 > 0:12:42any more than what he already has gone through.
0:12:42 > 0:12:45You know, his whole life has been a battle,
0:12:45 > 0:12:48and he's coped very well with all of that.
0:12:48 > 0:12:54But now, you know, this is something more worrying
0:12:54 > 0:12:56than anything else we've had to cope with.
0:12:58 > 0:13:00The family have got used to living with Duchenne,
0:13:00 > 0:13:04but it hasn't prepared them for the thought of losing Jack at only 15.
0:13:04 > 0:13:09Shirley's dealt with life-and-death situations on many occasions
0:13:09 > 0:13:11during her time at the hospice.
0:13:11 > 0:13:15Her experience, advice and emotional support will be an invaluable help
0:13:15 > 0:13:17to Jo during this difficult time.
0:13:19 > 0:13:22I've never really wanted to talk about end of life with Shirley,
0:13:22 > 0:13:25because Jack has always been so well,
0:13:25 > 0:13:29and we don't like to think about that.
0:13:29 > 0:13:33But now this has happened, you know, it's sort of made us...
0:13:35 > 0:13:37We need to talk about things like that and, you know,
0:13:37 > 0:13:43what we need to do and what we need to put in place and things.
0:13:43 > 0:13:45You know, just in case things were to go wrong.
0:13:45 > 0:13:49- Are you looking forward to putting the cap and gown on?- What?
0:13:49 > 0:13:52- Your designer gown.- Your designer gown.- Oh, I don't mind.
0:13:52 > 0:13:57- You don't mind that? - Be a bit breezy!
0:14:07 > 0:14:14It's important to me to pass exams because everybody does it, for one,
0:14:14 > 0:14:18and also because I do want to get a job in the future,
0:14:18 > 0:14:22and I want to have a good job, and a job that I enjoy doing.
0:14:22 > 0:14:25I don't just want to work in a supermarket checkout.
0:14:25 > 0:14:28Amy-Claire is usually too ill to attend school,
0:14:28 > 0:14:31so she has a few hours of home tuition every day.
0:14:32 > 0:14:36This month, she's going to have to sit her GCSE exams from her bedroom.
0:14:36 > 0:14:37She's expected to get A stars.
0:14:42 > 0:14:46Even though I might not have a future, I plan, like, I do.
0:14:46 > 0:14:50And even though I don't set, like, ridiculous long-term goals.
0:14:50 > 0:14:54Like, I tend to set sort of one-year, two-year goals.
0:14:54 > 0:15:00So a couple of years ago, it was, "Right, get GCSEs sit my exams and go to prom".
0:15:00 > 0:15:04So now I'm sort of nearing that, I'm sort of sitting here,
0:15:04 > 0:15:07thinking, "Right, I want to be 17".
0:15:07 > 0:15:10Even though, it's a bit of a random age to be honest.
0:15:10 > 0:15:13I didn't want to be 16 and I'm not that bothered about 18
0:15:13 > 0:15:15but I really want to be 17.
0:15:15 > 0:15:22And I do plan about moving out and having my own flat
0:15:22 > 0:15:26and doing a job that I really enjoy.
0:15:26 > 0:15:32And I think about things, I do want to get married and have a baby
0:15:32 > 0:15:35and I want to go to my friends' weddings
0:15:35 > 0:15:38and I want to do things like that, things that everyone else does.
0:15:38 > 0:15:42And I think even though I'm less likely to have that future,
0:15:42 > 0:15:48I probably plan more than my other friends would,
0:15:48 > 0:15:52just because I've had to think in more detail
0:15:52 > 0:15:55what would I really like to do.
0:15:56 > 0:16:00Parents Steve and Caroline have been told on many occasions
0:16:00 > 0:16:04not to expect Amy to live beyond her childhood
0:16:04 > 0:16:07but she keeps on defying the odds.
0:16:07 > 0:16:09Do we dare to hope for a future?
0:16:10 > 0:16:11Yeah.
0:16:11 > 0:16:16There are lots and lots of moments in lots and lots of days that we do.
0:16:16 > 0:16:19We were talking about Amy's future last night on the settee
0:16:19 > 0:16:22cos obviously we've got GCSEs and things.
0:16:22 > 0:16:26Steven hates talking about it at all because...
0:16:26 > 0:16:29it's like the acknowledgement that at some point,
0:16:29 > 0:16:33something is going to go belly-up, potentially.
0:16:34 > 0:16:36I don't feel like that any more.
0:16:36 > 0:16:39It took us a long, long time to come to the realisation
0:16:39 > 0:16:42that quality is far better than quantity.
0:16:42 > 0:16:47So for us...I want her to plan and talk about the future
0:16:47 > 0:16:51and have ambition because it improves her quality of life now.
0:16:51 > 0:16:55It's about what does she want to be, what does she want to do.
0:16:55 > 0:16:58And without any of that, you can't live a quality life.
0:16:58 > 0:17:02You can't be a real person if you've got no ambition,
0:17:02 > 0:17:06if you've got no interest, if you've got no focus.
0:17:17 > 0:17:22Today's the 11th of March, the day Jack has his operation.
0:17:26 > 0:17:27How do you feel, Jack?
0:17:27 > 0:17:29I don't know.
0:17:29 > 0:17:31Are you nervous?
0:17:31 > 0:17:33A little bit.
0:17:33 > 0:17:34A little bit nervous?
0:17:34 > 0:17:35Yeah.
0:17:37 > 0:17:42Jack's Duchenne and diabetes mean that any general aesthetic
0:17:42 > 0:17:45could cause fatal complications.
0:17:45 > 0:17:46Only a few months ago,
0:17:46 > 0:17:51one of Jack's friends with the same condition died whilst in theatre.
0:17:53 > 0:17:56He just takes everything, you know, in his stride.
0:17:56 > 0:18:01Everything goes above him but this has knocked him sideways.
0:18:02 > 0:18:06And he's angry. He feels, you know, why him?
0:18:07 > 0:18:10Jack's on his way, just going down to theatre.
0:18:10 > 0:18:13'You know, he's got a lot to put up with
0:18:13 > 0:18:18'and now he's been hit with the worst news you could ever be given.
0:18:18 > 0:18:21'It's just been a nightmare. It's been the worst week of our lives.
0:18:21 > 0:18:25'This has been harder than when he was diagnosed as a baby.'
0:18:27 > 0:18:30For now, Jack will be taken to theatre,
0:18:30 > 0:18:32and it's time for the family to say goodbye.
0:18:43 > 0:18:45I'm pooing my pants now.
0:18:45 > 0:18:46LAUGHTER
0:18:46 > 0:18:47You'll be fine.
0:18:47 > 0:18:51I'm doing my second English GCSE exam today.
0:18:53 > 0:18:54Oh, no!
0:18:54 > 0:18:58We literally just have to do just the basics on her GCSE days
0:18:58 > 0:19:02so we wake her two hours before her paper starts.
0:19:03 > 0:19:06She has a cup of tea and her breakfast
0:19:06 > 0:19:08and then we do all her meds
0:19:08 > 0:19:11and then she goes and does her bowel wash-out, which is her essential.
0:19:11 > 0:19:14And then we get clean pyjamas on, back into bed,
0:19:14 > 0:19:16then ready for the paper to start.
0:19:17 > 0:19:19Brilliant.
0:19:19 > 0:19:20So the larger print.
0:19:20 > 0:19:22Large print and yellow.
0:19:22 > 0:19:25It's quite stressful doing an exam but she's very, very aware now
0:19:25 > 0:19:31that any kind of strong emotion, doesn't matter what it is,
0:19:31 > 0:19:34any, like, strong anxiety,
0:19:34 > 0:19:39they'll just make her spasms 120 times more likely to happen
0:19:39 > 0:19:41and 120 times worse than they are.
0:19:41 > 0:19:43You'll be absolutely fine, Ame.
0:19:45 > 0:19:48You haven't missed a single bit of English work.
0:19:48 > 0:19:53Everything you've done, you've had an A or an A-star for. How could you possibly not be fine?
0:19:53 > 0:19:57Cos this is grammar. This isn't writing.
0:19:57 > 0:20:01Look, the time to worry is if you get unclassified more than once.
0:20:01 > 0:20:03And English is your first language.
0:20:03 > 0:20:05- Like you did.- Yeah!
0:20:09 > 0:20:13I think it's really, really easy sometimes in our house
0:20:13 > 0:20:18cos we're positive and particularly because the way Amy's attitude is
0:20:18 > 0:20:21towards her illness and perhaps our attitude.
0:20:21 > 0:20:24Sometimes very, very easy to forget the moments that we've had
0:20:24 > 0:20:25where we've thought,
0:20:25 > 0:20:28"We're not going to bring her home from hospital this time.
0:20:28 > 0:20:33"She's going to get worse and we're not going to have her for much longer."
0:20:33 > 0:20:37And sometimes when she's in one of her moments
0:20:37 > 0:20:42or her bits where she's tootling along, I suppose is the best description,
0:20:42 > 0:20:46it's incredibly easy to forget how poorly she is.
0:20:46 > 0:20:50And the only way to describe it is you can go along and you can be driving in the car
0:20:50 > 0:20:53and it can not have crossed your mind all day
0:20:53 > 0:20:55and then suddenly, it crosses your mind
0:20:55 > 0:20:58and your stomach turns upside down and you feel sick.
0:20:58 > 0:21:01And you feel that horrible feeling because all we know
0:21:01 > 0:21:05is it's a cruel, horrible disease but we don't know what it is.
0:21:05 > 0:21:08Other people might be hoping for a miracle cure.
0:21:08 > 0:21:11We've gone past the point of the miracle cure.
0:21:11 > 0:21:13It ain't here and it's not going to happen
0:21:13 > 0:21:16and we got no intention of wasting energy on a miracle cure.
0:21:16 > 0:21:21What we hope for is more good days than bad ones.
0:21:23 > 0:21:25I think it's gone OK.
0:21:25 > 0:21:27I know the second half has gone OK.
0:21:27 > 0:21:31Not so sure about the first part, cos I was a bit bored, to be honest.
0:21:31 > 0:21:33So I just got it finished, like, as quick as possible.
0:21:35 > 0:21:38We went to leavers' assembly last week
0:21:38 > 0:21:43and I remember it's not that long ago we thought we'd never, ever see her leave school - not ever.
0:21:43 > 0:21:46And we sat in leavers' assembly absolutely sobbing.
0:21:46 > 0:21:48Absolutely sobbing.
0:21:48 > 0:21:54Not because she's leaving school but because it was a really, really, really amazing thing to achieve.
0:21:54 > 0:21:56It was really incredible...
0:22:00 > 0:22:04To watch someone to leave school...
0:22:05 > 0:22:07..like her peers, really,
0:22:07 > 0:22:11when actually you spent a long time thinking she's never going to do it.
0:22:13 > 0:22:16And I think she does that to us a lot.
0:22:16 > 0:22:18That's what I mean about life.
0:22:18 > 0:22:21It would be a lot easier to say, "We won't bother with school.
0:22:21 > 0:22:24"Why are we bothering with school? She's got no future".
0:22:24 > 0:22:28She's got a future, she's got a huge future.
0:22:28 > 0:22:31It's just not the future that everybody else has.
0:22:31 > 0:22:34And it isn't the one that everybody wakes up in the morning
0:22:34 > 0:22:38and the general Joe Public perceives as a future.
0:22:38 > 0:22:42And I think Joe Public will find it very hard to understand
0:22:42 > 0:22:46that you can have such a lust and a passion for life
0:22:46 > 0:22:50when you've got all those...things to face.
0:22:53 > 0:22:55But she does.
0:22:59 > 0:23:03Having said their last goodbyes, Jack's parents Jo and Gary
0:23:03 > 0:23:06have been suffering an agonising wait for over three hours.
0:23:06 > 0:23:08Shirley from Ty Hafan has not left their side.
0:23:08 > 0:23:12Just spoken to the consultant and the anaesthetist.
0:23:12 > 0:23:14He's doing really well.
0:23:14 > 0:23:18The tumour was contained, so they were able to remove it all
0:23:18 > 0:23:21and he's breathing on his own.
0:23:21 > 0:23:22So fantastic news.
0:23:22 > 0:23:24That's so wonderful!
0:23:33 > 0:23:35This is Jack, now, just in recovery.
0:23:36 > 0:23:38Feeling a bit sick.
0:23:40 > 0:23:41But he's doing so well.
0:23:43 > 0:23:45Having pulled through, only time will tell
0:23:45 > 0:23:50what scars the experience will leave on Jack and the family.
0:23:50 > 0:23:53When they were taking Jack down, I went down with him
0:23:53 > 0:23:57and I wanted to go in with him until he went to sleep.
0:23:58 > 0:24:02It was the most horrendous feeling in the world to think
0:24:02 > 0:24:06that I could've been saying goodbye to him for the last time.
0:24:13 > 0:24:16When we first raise the thoughts of death
0:24:16 > 0:24:18obviously it's really hard for the families.
0:24:18 > 0:24:22The fact is that those, the parents are already upset
0:24:22 > 0:24:24that they're already thinking all those thoughts.
0:24:24 > 0:24:28But how do you... In my experience they've often said,
0:24:28 > 0:24:30"How do we voice them?"
0:24:30 > 0:24:33"We have these thoughts in our heads but how do we voice them?"
0:24:33 > 0:24:36So, for us, we're able to help them
0:24:36 > 0:24:41and give them space to voice those concerns.
0:24:41 > 0:24:43In the coming weeks and months,
0:24:43 > 0:24:46Shirley from Ty Hafan will work closely with the family
0:24:46 > 0:24:49to help them come to terms with their feelings regarding death.
0:24:49 > 0:24:52They've always known that Jack may only live a short life,
0:24:52 > 0:24:56but the recent events have been a cruel reminder of the emotions
0:24:56 > 0:24:59they'll have to face when the time comes.
0:25:05 > 0:25:08I am scared about dying, but it's not so much about
0:25:08 > 0:25:14the dying part, it's more about what I leave behind.
0:25:15 > 0:25:18It's the people and things that you leave behind.
0:25:18 > 0:25:23- I bet I look really serious. - We can see everything.- Oh, no...
0:25:23 > 0:25:26'My Grandma says if you didn't laugh about it you'd be crying
0:25:26 > 0:25:29'and I think that's the best way to be, make a joke about it.'
0:25:29 > 0:25:32# It's Amy, Amy, Amy, in the morning.
0:25:32 > 0:25:36# It's Amy, Amy, Amy in the night.
0:25:36 > 0:25:39# It's Amy, Amy, Amy in the teatime.
0:25:39 > 0:25:42# It's Amy, Amy, Amy, yes, it's Amy, Amy, Amy, yes,
0:25:42 > 0:25:44# It's Amy, Amy, Amy all the time.
0:25:44 > 0:25:47# It's Amy, Amy, Amy, Amy all the time. #
0:25:50 > 0:25:54It's a tragic irony that it's her cruel illness that's given Amy
0:25:54 > 0:25:57her unique perspective on life and death,
0:25:57 > 0:26:00which has led to both her untameable lust for life
0:26:00 > 0:26:03and a mature philosophy that defies her young age.
0:26:03 > 0:26:08Though there may be no cure, for Amy, Steve and Caroline,
0:26:08 > 0:26:11laughter is the best medicine.
0:26:11 > 0:26:17I have one consultant, and when I was really ill about a year ago,
0:26:17 > 0:26:23before I started on my treatment, I was a lot, lot worse.
0:26:23 > 0:26:27And we went in and I was talking about it and I was saying,
0:26:27 > 0:26:30"Now I've started having full-body spasms
0:26:30 > 0:26:32"and I get really bad back spasms most days
0:26:32 > 0:26:34"and I have this most days and this happens
0:26:34 > 0:26:38"and I get really bad pain and my patch has gone up." But we were
0:26:38 > 0:26:42just cracking jokes as we were saying it all the way through.
0:26:42 > 0:26:44And, normally, he's quite eccentric,
0:26:44 > 0:26:48he would be one of the doctors who'd be laughing
0:26:48 > 0:26:52and cracking jokes as well and he actually turned around and said,
0:26:53 > 0:26:57"I know this is your way of coping, by making it humourous,
0:26:57 > 0:27:00"but, actually, it's not that funny."
0:27:12 > 0:27:13What made you cry?
0:27:15 > 0:27:17I was saying about Johann.
0:27:17 > 0:27:18Yeah.
0:27:19 > 0:27:21And what did he say?
0:27:22 > 0:27:24He said, "We trivialize it."
0:27:26 > 0:27:29"But actually what's happening is a bit of a shit deal."
0:27:29 > 0:27:33And then he said, "Typical NHS, you can't find a tissue anywhere when you want one."
0:27:33 > 0:27:37No. We had a loo roll.
0:27:37 > 0:27:39A giant loo roll that was this big.
0:27:42 > 0:27:44And even he cried.
0:27:44 > 0:27:49He did cry. And I cried and you cried, cos it is a shit deal.
0:27:52 > 0:27:54I'm really tired now.
0:27:54 > 0:27:56Are you tired?
0:27:56 > 0:28:00And it is a shit deal, but it's not a shit deal all the time, is it?
0:28:00 > 0:28:04- I don't think it's a shit deal most of the time.- No.
0:28:05 > 0:28:07What do you think it is, then?
0:28:08 > 0:28:12I said to him, "I'm quite lucky."
0:28:12 > 0:28:16- Why, coz you got me? I know, Ame. - Cos you're magic.
0:28:17 > 0:28:18Why?
0:28:19 > 0:28:21Why do you think you're lucky?
0:28:21 > 0:28:27Cos I said, "I wouldn't have done all, like, those amazing things."
0:28:27 > 0:28:31- And I wouldn't.- Have met all the amazing people?- Exactly.
0:28:31 > 0:28:35- I wouldn't know how much, my friends and family.- You'd be like all the other 16-year-olds.
0:28:35 > 0:28:40Worrying about my mascara, which is lucky I don't wear on camera,
0:28:40 > 0:28:42because I'd have it down here by now.
0:29:00 > 0:29:03Subtitles by Red Bee Media Ltd
0:29:03 > 0:29:06Email subtitling@bbc.co.uk