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