Me, My Dad and His Kidney My Life


Me, My Dad and His Kidney

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That's me, lying on the operating table in hospital.

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It's the biggest moment of my life.

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You see, my body stopped working properly.

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But I have a superhero ready to save me.

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My dad.

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This is the story of me, my dad and his kidney.

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I'm Raphael.

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I'm nine years old, and I live in Bedford with my mum and dad.

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My mum's awesome.

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And my dad's amazing too,

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and we do everything together.

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My dad's like a little friend to me...when he's not grumpy.

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I'm football crazy, and I have been since I was little.

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I used to win football trophies all the time.

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My life was going great until nine months ago.

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And then everything went horribly wrong.

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I became very poorly. I couldn't wee at all.

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I could only vomit. That's cos I had Goodpasture's syndrome.

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Goodpasture's syndrome is a really rare illness

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that affects one in a million children.

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It left me fighting for my life.

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In hospital, I was a bit scared.

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He was in a very, very serious condition. A very serious condition.

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He was a completely different child,

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a child that I thought we were losing.

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I looked like a vampire, all pale.

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It's horrible that in the past I could do a lot,

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and now I can't do a lot.

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My illness killed my kidneys,

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two of the most important organs in my body.

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I had no idea what kidneys were.

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I thought is it a chocolate or what is it?

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Is it, like, part of your brain?

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It turns out your kidneys aren't part of your brain.

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They're just below your rib cage at the back of your body.

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You know what a kidney bean looks like,

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then you have a pretty good idea of what a real kidney looks like.

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Those two little beans are my kidneys.

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Your kidneys basically clean your blood,

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getting rid of all the waste and chemicals that build up.

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They filter your blood about 400 times a day,

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so they are pretty busy.

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But my two kidneys don't work any more, and they can't be fixed.

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The good news is, I have a Super-Dad

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ready to save me.

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You see, you only need one kidney to keep you alive.

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And my dad is giving me one of his kidneys.

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He's my son, I love him

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and I think any parent in the world would do the same if they could.

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I'm quite privileged, really, that I'm in a position to help him.

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In just a week's time, my dad and I will be having an operation

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called a kidney transplant.

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The surgeons are going to take out one of Dad's kidneys

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and put it into my body.

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My dad is giving me a kidney because my dad loves me very much.

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It makes me happy because I love him so much too.

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But until the operation,

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I'm being kept alive by a machine that lives in my bedroom.

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This is my dialysis machine.

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Without this I wouldn't be able to do football, cricket,

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bike-riding, even going out to shops.

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I'd just be home with a bucket because I'd really feel sick.

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And this is like my kidney but outside of my body.

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When your kidneys work,

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you get rid of all your waste when you go for a wee

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but I can't do that.

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So, the dialysis machine does it for me.

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This is my catheter.

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This connects to this, that will go into here.

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It travels to one tube to another tube.

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It's like a big filter

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that flushes out all the bad stuff out of my body.

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A special cleaning fluid is pumped into my body

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through a tube in my tummy.

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This fluid travels right through me and takes away all the waste.

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Each night, my mum sets up the dialysis machine.

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This machine is keeping Raphael alive.

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Without this machine he wouldn't be able to function.

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14 litres of liquid pass through my body every night.

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That's like 44 cans of drink.

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While most kids spend their evenings however they want,

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I'm trapped in my bedroom from eight o'clock each night

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and I can't get out till morning.

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Are you ready, Raph?

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My mum attaches the dialysis machine to the tube in my body

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and for ten hours I become part boy, part machine.

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Just feel left out, really.

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Cos I don't go to my friends' sleepovers and everything.

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It's like a prison because if you think, I can't get out of it

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till I get released.

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It gets really annoying cos I can't sleep in this position

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because if I sleep in this position, you see this tube gets bent

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and when it gets bent the machine bleeps.

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And the machine's bleeps keep me awake all night long.

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I toss and I turn

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and I never sleep properly.

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Eventually, it's morning

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and I hate mornings.

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Argh!

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At 6:30 every day, it's Dad's job to release me.

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OK, you're a free man.

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Dad, I need a tissue, you know.

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I get fed up of being poorly. I feel very grumpy.

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I just feel like shouting, saying, "Stop doing this!"

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Emptying the bags of waste isn't much fun for my dad either.

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I feel very tired getting off my machine and going to school.

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Dialysis makes children very tired.

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And particularly in the morning it makes you feel drained.

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He does get really, really moody.

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And it's not just the dialysis machine that gets me down.

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Because my machine can only do 20% of what real kidneys can do,

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I can only drink up to one litre of liquid a day,

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which is less than half of what most kids drink.

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I have to measure everything.

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-Finished.

-Is that all you're having?

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I've had my glass of juice.

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-But what about the rest of your breakfast?

-Don't want it.

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After this transplant we'll be back to where we should be.

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My dad and I are going to have our kidney transplant operation

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in a week's time.

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Once I have Dad's kidney inside me, I won't need dialysis any more,

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and, hopefully, I'll be back how I used to be.

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Luckily for us, at Great Ormond Street Hospital

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there are some very clever doctors who do this operation all the time.

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So Dad and I are off to meet them in London.

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This is one of the most famous hospitals in the world

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and the best bit is, it's just for kids.

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Hello.

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Are you my surgeon?

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Are you my patient?

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Nice to meet you, Raphael.

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You will come to this hospital here,

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and your dad will go to the adult hospital

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which is just down the road.

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Dad's operation will be about three hours,

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your operation will be about three to four hours.

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Mine's longer!

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Your dad's kidney is about the size of my fist.

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And, believe it or not, we can hide that inside your tummy

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without you really knowing it.

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There'll be no kidney-shaped lump anywhere.

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How long do you think the kidney will last?

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That's a very good question.

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To be honest with you, Raphael, nobody knows.

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But I hope it lasts you about 10-15 years.

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Back home there's two people that can't wait for my transplant,

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my mates, Callum and James.

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What's going to happen?

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They're going to take Dad to theatre and get the kidney out with a hand,

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then they'll take it to the operation room and just put it in.

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-Then you've got a kidney.

-Where are they going to put the kidney?

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Well, usually they're here.

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But they're going to put mine here in front of my rib cage.

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Why can't it be anywhere else?

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Well, that's the only place they can put it.

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Today is my last day at school for a few months.

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I'm really going to miss everyone.

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Why have we got a present for Raphael?

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Because he's going into hospital.

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OK, I've been very impressed by his courage

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and the way that he comes in everyday, happy, smiling,

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ready for school.

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So, do you want to come out here?

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-Shall we let him open it?

-ALL: Yes.

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Oh, brilliant.

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Thanks!

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That's a massive surprise.

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It's really great and thoughtful.

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His dad's giving him a kidney and I think it's really amazing

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that they can do that.

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Shall we give him a round of applause?

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So hopeful for him. Really, really hope it goes well.

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Yeah, it's really nice, like I've got backup.

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My operation is only two days away

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and it's time for us all to face the music.

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Worried about Raphael.

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He's going to go through a lot the next few days

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and I don't think he don't think he realises at the moment.

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I know it's quite a major operation,

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which involves serious risks as well

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but I do hope everything's going to go well.

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What's going to happen on Tuesday?

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I'm having my operation.

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How do you feel about it?

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Uh, scared.

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But what are you looking forward to?

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Going to, like, football clubs and stay over, sleepovers.

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Feeling better.

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OK.

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We're off to London for my big operation.

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Fingers crossed, when I come back home

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I'll have one of Dad's kidneys inside me.

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It feels really good being here, seeing the nurses.

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142.

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Come on, do the wiggle wiggle. That's it, wiggle wiggle.

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Hi, I'm Jilly, I'm one of the senior nurses in theatre.

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-Hello.

-Hello.

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I'm getting a tour of the operating theatre

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to prepare me for the big day.

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-Is this where you wash your hands?

-It is.

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If you put your hand under there. Not this one, that one.

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This is what we call our swab board.

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We record all the swabs and all the instruments, to make sure that...

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-Why do you need instruments, like a guitar?

-Not musical instruments,

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surgical instruments, like, a scissors and clips.

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So, these are special operating lights.

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So when the surgeons lean in, it doesn't cast a shadow

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so they can see exactly what they're doing.

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I thought there would be like loads of machines

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and very little space to move about

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but it was opposite. Less equipment and more space to move about.

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What does this do again?

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That's the machine that will give you the gases that keep you asleep

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and also has the monitors for your heartbeat.

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Looking around the operation room has made me less nervous

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and more confident for tomorrow.

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-You're not going to start operating on me now, are you?

-No.

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Dad needs to travel across London to Guy's Hospital,

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to get ready for his operation.

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It's time to say goodbye.

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I love you very much, and hopefully, you look after yourself

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-and I hope the doctors look after you and the nurses.

-They will do.

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Kisses, I'll give you five.

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All right. One, two, three...

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OK, you take care.

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OK, bye.

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I feel very sad because I won't be seeing him for a couple of days,

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but I know the nurses and the doctors will take care of him.

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Finally, it's the day we have all been waiting for.

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Today is the operation day.

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I'm feeling quite nervous but very happy.

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It's like a victory day today for my body

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because I'm going to be better.

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Dad has to be brave first.

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Whatever I go through, I know that he's going through worse.

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It's going to be worthwhile, you know, what I'm doing.

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There's a reason to it and it's to give him a better quality of life,

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and to get him back on his feet again to how he was before.

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He's given a special gas to send him into a really deep sleep

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so he won't feel or remember a thing.

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His surgeon, Mr Olsberg,

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has been performing kidney transplants for seven years,

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so Dad's in safe hands.

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What Duane is doing for Raphael is an amazing thing.

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It's a big operation to go through.

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The surgeon operates through a small hole in Dad's tummy.

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This is called keyhole surgery.

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It means he can use a special camera and get right inside Dad's body

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without leaving a big scar.

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An hour into Dad's operation and Dad's kidney is in sight.

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The surgeon can slowly disconnect it

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from the important tubes and blood vessels in Dad's body,

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and safely take it out,

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leaving the other kidney to take over all cleaning duties.

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Beautiful kidney. Lovely. OK.

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So, why don't we bag that then?

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To keep Dad's kidney alive, it's put in ice and wrapped up safely for me.

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It will only live for a few hours outside Dad's body,

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so they need to get it over to me quickly.

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As Dad's kidney makes its journey across London to my hospital...

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..it's my turn to be brave.

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I'm feeling scared

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but keep on thinking of all the amazing things I'll be able to do

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when it's all over.

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Just like Dad, I'm being sent into a deep, deep sleep

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so I won't feel a thing.

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My surgeon Mr Mahmoud has done over four hundred operations like mine,

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so he's definitely the right man for the job.

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Kidney's come across from Guy's Hospital and we've prepared it,

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made sure that it's ready for implanting into Raphael.

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Mr Mahmoud needs to work quickly to get Dad's kidney into me.

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We're making an incision on the right side of the abdomen.

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My old kidneys are staying where they are,

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so the first job is to make room in my body for my new kidney.

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And we're going to need a big space cos it's a big kidney.

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An hour later

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and the surgeon has reached the most important part of the operation.

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Now we're pretty much ready to put the kidney in.

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My surgeon carefully stitches together the blood vessels

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that carry blood to and from the kidney

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and attaches the tube that carries wee to my bladder.

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Once the blood begins to flow into the kidney,

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it should begin to work in my body and start to make urine.

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It's been over two hours since my operation began

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and it's a long, worrying wait for my mum.

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It's a real emotional rollercoaster. Lots of tears.

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I feel really scared for both of them

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because they're the most precious people in my life.

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After three hours Dad's kidney is connected,

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and it turns from purple to pink and starts making urine.

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Now it's working, Dad's kidney is officially part of me.

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It looks beautiful. Thanks, everyone.

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It went very well. No problems at all.

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The kidney looks very nice.

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It's working nicely so we're very pleased.

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While I head off to the recovery room,

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my mum finally gets news about both our operations.

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-Everything was absolutely fine.

-Thank you very much. Thank you.

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-Yeah, no problems at all.

-You have very good hands,

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thank you very much.

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Have a nice evening. Thank you.

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Ah, what a relief.

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Dad and I have made it safely through our kidney transplant.

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Now, after four hours apart...

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..Mum is able to see me again.

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Daddy sends his love to you.

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I feel very proud that he's been so brave.

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I know he's gone through so much pain.

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So, I'm going to send this picture to Daddy now.

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My photo flies across to Guy's Hospital in London

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and into Dad's mobile.

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Knowing I'm OK brings a big smile to his face.

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it's all worth it now. I'm happy, really, really happy.

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Dad and I spend the next day recovering.

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Just two days after the operation, I'm starting to feel better.

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It's not as bad as I thought it was going to be.

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The only part I remember is gas and that's it.

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I've still got a few tubes in my body and feel a bit weird.

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But the best thing is, thanks to Dad's kidney,

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I can drink as much as I want.

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It's a brilliant feeling

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cos I've been waiting for months to drink orange.

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Sometimes I could just get a drink and start measuring and think,

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oh, I don't need to measure cos I'm not on dialysis.

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Dr Marks is checking Dad's kidney all the time

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to make sure it's happy living in my body.

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Your blood tests show that your dad's kidney is working really well.

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My tummy is still really sore from the operation,

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so getting out of bed for the first time is difficult.

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Now you're in charge, what do you want us to do?

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Lift this up first.

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Which one? This one?

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OK.

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Hey, well done.

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Just little steps.

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OK, you feel a bit dizzy, just stay there, OK?

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-Sit for a minute.

-Breathe, breathe, yeah.

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After a big operation like mine,

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it's so hard to do the smallest things.

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Nudge a little bit this way, so we don't pull your lines.

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Getting back on my feet is a big step on my road to recovery.

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Just take a minute there. Keep on breathing.

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Well, it's amazing. He's sitting in a chair now.

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That's the first time he got out of bed, did really, really well,

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very brave, brilliant.

0:21:160:21:18

Thumbs up and a big smile, please, for Daddy.

0:21:180:21:21

I only make it to the chair for now, but it feels good!

0:21:210:21:25

Each day I'm getting a little bit stronger.

0:21:260:21:29

But being apart from my dad makes me feel sad.

0:21:300:21:34

I miss him very much and I love him

0:21:360:21:40

and I think he's the best dad in the world.

0:21:400:21:44

Dad is still not well enough to go home,

0:21:470:21:50

but the great news is that he's strong enough to come and visit me.

0:21:500:21:55

He's been through a lot of pain to give me his kidney

0:21:550:21:59

and when he comes here today

0:21:590:22:00

I'm going to give him a big hug and a kiss.

0:22:000:22:03

So, three days after giving me a kidney,

0:22:040:22:08

I can finally see my dad again, face to face.

0:22:080:22:12

Hello.

0:22:160:22:17

How are you?

0:22:170:22:19

And it's the best feeling ever.

0:22:190:22:20

Careful. Are you all right?

0:22:200:22:24

Careful.

0:22:240:22:26

You all right?

0:22:260:22:29

Every night I tried to have a dream about you.

0:22:330:22:37

And I was thinking about you.

0:22:370:22:39

And has my kidney been well behaved?

0:22:390:22:42

It's quite heavy.

0:22:420:22:43

It's like three bricks inside my body when I walk,

0:22:430:22:46

that's why I have to do penguin steps.

0:22:460:22:49

Is it a bit weird that you're missing a part of your body?

0:22:500:22:55

You don't know if you've got one or two kidneys inside you,

0:22:550:22:58

you don't feel any different.

0:22:580:23:00

And this is the magical thing about kidneys. You know...

0:23:000:23:03

It's like camouflage.

0:23:030:23:04

You don't know whether you've got two kidneys or one kidney.

0:23:040:23:08

Seeing Raphael makes it worthwhile.

0:23:080:23:10

The pain and suffering and everything,

0:23:100:23:12

to see that he's healthy and back on his feet again, where he should be.

0:23:120:23:15

Brilliant.

0:23:150:23:17

Every second I've missed you in hospital.

0:23:180:23:21

I've missed you too, mate.

0:23:210:23:24

I'll get up now.

0:23:240:23:26

Lean on me if you need to.

0:23:300:23:32

I love you, Daddy, very very much.

0:23:340:23:38

-Thank you.

-Good boy.

0:23:380:23:40

I have been in hospital for a week now

0:23:470:23:50

and I'm hoping I'll be well enough to go home soon.

0:23:500:23:53

Hello, how are you doing?

0:23:530:23:56

But it's up to Dr Marks to decide.

0:23:560:23:58

How do you feel compared to being on dialysis? Much better?

0:24:000:24:03

Being on dialysis I felt 45%,

0:24:030:24:06

but I feel 95%.

0:24:060:24:08

95%? Stick your tongue out.

0:24:080:24:11

-Excellent.

-I feel 96.

0:24:110:24:13

96, just with me examining you you've gone up a percent?

0:24:130:24:16

I think your kidney function is excellent.

0:24:160:24:19

The good news is that you can be discharged from the ward today.

0:24:190:24:22

It's amazing,

0:24:220:24:23

an amazing transformation from a child who was so unwell

0:24:230:24:27

to a very happy, full of energy... so, I can say I've got my son back.

0:24:270:24:34

We've got him how he should be, you know, healthy, on his feet,

0:24:340:24:38

how he was before.

0:24:380:24:39

It's a gift of life which will see him into his adult years.

0:24:390:24:43

Over the next couple of months my life changes, big time.

0:24:450:24:48

My dialysis machine is gone and I can sleep again.

0:24:480:24:52

It's still early days,

0:24:520:24:54

but everything is going according to plan.

0:24:540:24:58

Having a new kidney feels tremendous.

0:24:580:25:01

I can drink a lot, I can eat a lot,

0:25:010:25:04

and it makes me feel much better and much happier

0:25:040:25:07

because now I can do everything I wanted to.

0:25:070:25:09

I'm even back out playing football.

0:25:110:25:15

To celebrate, Mum and Dad have brought me to Manchester

0:25:150:25:18

to my favourite football club!

0:25:180:25:20

I thought I was coming to watch the match,

0:25:240:25:27

but there's a big surprise in store for me!

0:25:270:25:30

On behalf of Manchester United Foundation,

0:25:300:25:34

I want you to be the mascot tonight for Manchester United.

0:25:340:25:37

Yay!

0:25:390:25:40

I can't believe it!

0:25:400:25:42

I feel like the luckiest boy alive!

0:25:420:25:46

So exciting! Ferdinand and Evan!

0:25:460:25:50

I'm getting to meet all my favourite football heroes.

0:25:500:25:53

Can you sign this, Giggs?

0:25:530:25:56

They even sign my shirt!

0:25:560:25:58

Hernandez?

0:25:580:25:59

Fabio, Rafael, can you sign this please?

0:26:020:26:04

Fabio, Rafael.

0:26:080:26:10

-My name's Raphael as well.

-Yeah?

0:26:100:26:13

Getting autographs is amazing, and there's more to come!

0:26:130:26:18

The captain, Evra, walks me down the tunnel towards the pitch.

0:26:180:26:22

Look at my autographs.

0:26:220:26:24

Oh, nice!

0:26:240:26:25

CHEERING

0:26:250:26:28

-I'm a bit scared.

-Yeah?

0:26:280:26:30

-I'm a bit nervous.

-Ah, it's OK, it's OK.

0:26:300:26:34

'Premier League champions, Manchester United!'

0:26:340:26:38

CHEERING

0:26:380:26:41

And we both lead the team out in front of 75,000 people.

0:26:410:26:45

It doesn't get much better than this!

0:26:460:26:49

Really, really brilliant. A special day today.

0:26:590:27:02

It's quite a moving experience watching him go out there.

0:27:020:27:06

Seeing him go on the pitch full of energy, smiling,

0:27:090:27:14

it's just absolutely incredible.

0:27:140:27:15

If he was still on dialysis this wouldn't have happened.

0:27:150:27:19

So thanks to Duane's kidney, now Raphael's got a new life.

0:27:200:27:24

It's a dream come true,

0:27:280:27:30

it's a beautiful ending to a long, long journey.

0:27:300:27:33

I've had a brilliant day today

0:27:360:27:38

and it's probably one of the best I've ever had.

0:27:380:27:41

And it's all because of my Super-Dad.

0:27:430:27:46

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