Me, My Dad and His Kidney My Life

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

It's the biggest moment of my life.

You see, my body stopped working properly.

But I have a superhero ready to save me.

My dad.

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

I'm Raphael.

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

My mum's awesome.

And my dad's amazing too,

and we do everything together.

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

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

I used to win football trophies all the time.

My life was going great until nine months ago.

And then everything went horribly wrong.

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

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

Goodpasture's syndrome is a really rare illness

that affects one in a million children.

It left me fighting for my life.

In hospital, I was a bit scared.

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

He was a completely different child,

a child that I thought we were losing.

I looked like a vampire, all pale.

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

and now I can't do a lot.

My illness killed my kidneys,

two of the most important organs in my body.

I had no idea what kidneys were.

I thought is it a chocolate or what is it?

Is it, like, part of your brain?

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

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

You know what a kidney bean looks like,

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

Those two little beans are my kidneys.

Your kidneys basically clean your blood,

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

They filter your blood about 400 times a day,

so they are pretty busy.

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

The good news is, I have a Super-Dad

ready to save me.

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

And my dad is giving me one of his kidneys.

He's my son, I love him

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

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

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

called a kidney transplant.

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

and put it into my body.

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

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

But until the operation,

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

This is my dialysis machine.

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

bike-riding, even going out to shops.

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

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

When your kidneys work,

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

but I can't do that.

So, the dialysis machine does it for me.

This is my catheter.

This connects to this, that will go into here.

It travels to one tube to another tube.

It's like a big filter

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

A special cleaning fluid is pumped into my body

through a tube in my tummy.

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

Each night, my mum sets up the dialysis machine.

This machine is keeping Raphael alive.

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

14 litres of liquid pass through my body every night.

That's like 44 cans of drink.

While most kids spend their evenings however they want,

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

and I can't get out till morning.

Are you ready, Raph?

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

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

Just feel left out, really.

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

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

till I get released.

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

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

and when it gets bent the machine bleeps.

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

I toss and I turn

and I never sleep properly.

Eventually, it's morning

and I hate mornings.

Argh!

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

OK, you're a free man.

Dad, I need a tissue, you know.

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

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

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

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

Dialysis makes children very tired.

And particularly in the morning it makes you feel drained.

He does get really, really moody.

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

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

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

which is less than half of what most kids drink.

I have to measure everything.

-Finished.

-Is that all you're having?

I've had my glass of juice.

-But what about the rest of your breakfast?

-Don't want it.

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

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

in a week's time.

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

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

Luckily for us, at Great Ormond Street Hospital

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

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

This is one of the most famous hospitals in the world

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

Hello.

Are you my surgeon?

Are you my patient?

Nice to meet you, Raphael.

You will come to this hospital here,

and your dad will go to the adult hospital

which is just down the road.

Dad's operation will be about three hours,

your operation will be about three to four hours.

Mine's longer!

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

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

without you really knowing it.

There'll be no kidney-shaped lump anywhere.

How long do you think the kidney will last?

That's a very good question.

To be honest with you, Raphael, nobody knows.

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

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

my mates, Callum and James.

What's going to happen?

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

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

-Then you've got a kidney.

-Where are they going to put the kidney?

Well, usually they're here.

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

Why can't it be anywhere else?

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

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

I'm really going to miss everyone.

Why have we got a present for Raphael?

Because he's going into hospital.

OK, I've been very impressed by his courage

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

ready for school.

So, do you want to come out here?

-Shall we let him open it?

-ALL: Yes.

Oh, brilliant.

Thanks!

That's a massive surprise.

It's really great and thoughtful.

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

that they can do that.

Shall we give him a round of applause?

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

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

My operation is only two days away

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

Worried about Raphael.

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

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

I know it's quite a major operation,

which involves serious risks as well

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

What's going to happen on Tuesday?

I'm having my operation.

How do you feel about it?

Uh, scared.

But what are you looking forward to?

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

Feeling better.

OK.

We're off to London for my big operation.

Fingers crossed, when I come back home

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

It feels really good being here, seeing the nurses.

142.

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

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

-Hello.

-Hello.

I'm getting a tour of the operating theatre

to prepare me for the big day.

-Is this where you wash your hands?

-It is.

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

This is what we call our swab board.

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

-Why do you need instruments, like a guitar?

-Not musical instruments,

surgical instruments, like, a scissors and clips.

So, these are special operating lights.

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

so they can see exactly what they're doing.

I thought there would be like loads of machines

and very little space to move about

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

What does this do again?

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

and also has the monitors for your heartbeat.

Looking around the operation room has made me less nervous

and more confident for tomorrow.

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

-No.

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

to get ready for his operation.

It's time to say goodbye.

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

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

-They will do.

Kisses, I'll give you five.

All right. One, two, three...

OK, you take care.

OK, bye.

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

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

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

Today is the operation day.

I'm feeling quite nervous but very happy.

It's like a victory day today for my body

because I'm going to be better.

Dad has to be brave first.

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

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

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

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

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

so he won't feel or remember a thing.

His surgeon, Mr Olsberg,

has been performing kidney transplants for seven years,

so Dad's in safe hands.

What Duane is doing for Raphael is an amazing thing.

It's a big operation to go through.

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

This is called keyhole surgery.

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

without leaving a big scar.

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

The surgeon can slowly disconnect it

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

and safely take it out,

leaving the other kidney to take over all cleaning duties.

Beautiful kidney. Lovely. OK.

So, why don't we bag that then?

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

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

so they need to get it over to me quickly.

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

..it's my turn to be brave.

I'm feeling scared

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

when it's all over.

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

so I won't feel a thing.

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

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

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

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

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

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

My old kidneys are staying where they are,

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

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

An hour later

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

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

My surgeon carefully stitches together the blood vessels

that carry blood to and from the kidney

and attaches the tube that carries wee to my bladder.

Once the blood begins to flow into the kidney,

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

It's been over two hours since my operation began

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

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

I feel really scared for both of them

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

After three hours Dad's kidney is connected,

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

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

It looks beautiful. Thanks, everyone.

It went very well. No problems at all.

The kidney looks very nice.

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

While I head off to the recovery room,

my mum finally gets news about both our operations.

-Everything was absolutely fine.

-Thank you very much. Thank you.

-Yeah, no problems at all.

-You have very good hands,

thank you very much.

Have a nice evening. Thank you.

Ah, what a relief.

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

Now, after four hours apart...

..Mum is able to see me again.

Daddy sends his love to you.

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

I know he's gone through so much pain.

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

My photo flies across to Guy's Hospital in London

and into Dad's mobile.

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

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

Dad and I spend the next day recovering.

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

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

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

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

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

I can drink as much as I want.

It's a brilliant feeling

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

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

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

Dr Marks is checking Dad's kidney all the time

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

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

My tummy is still really sore from the operation,

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

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

Lift this up first.

Which one? This one?

OK.

Hey, well done.

Just little steps.

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

-Sit for a minute.

-Breathe, breathe, yeah.

After a big operation like mine,

it's so hard to do the smallest things.

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

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

Just take a minute there. Keep on breathing.

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

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

very brave, brilliant.

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

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

Each day I'm getting a little bit stronger.

But being apart from my dad makes me feel sad.

I miss him very much and I love him

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

Dad is still not well enough to go home,

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

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

and when he comes here today

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

So, three days after giving me a kidney,

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

Hello.

How are you?

And it's the best feeling ever.

Careful. Are you all right?

Careful.

You all right?

Every night I tried to have a dream about you.

And I was thinking about you.

And has my kidney been well behaved?

It's quite heavy.

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

that's why I have to do penguin steps.

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

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

you don't feel any different.

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

It's like camouflage.

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

Seeing Raphael makes it worthwhile.

The pain and suffering and everything,

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

Brilliant.

Every second I've missed you in hospital.

I've missed you too, mate.

I'll get up now.

Lean on me if you need to.

I love you, Daddy, very very much.

-Thank you.

-Good boy.

I have been in hospital for a week now

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

Hello, how are you doing?

But it's up to Dr Marks to decide.

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

Being on dialysis I felt 45%,

but I feel 95%.

95%? Stick your tongue out.

-Excellent.

-I feel 96.

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

I think your kidney function is excellent.

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

It's amazing,

an amazing transformation from a child who was so unwell

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

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

how he was before.

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

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

My dialysis machine is gone and I can sleep again.

It's still early days,

but everything is going according to plan.

Having a new kidney feels tremendous.

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

and it makes me feel much better and much happier

because now I can do everything I wanted to.

I'm even back out playing football.

To celebrate, Mum and Dad have brought me to Manchester

to my favourite football club!

I thought I was coming to watch the match,

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

On behalf of Manchester United Foundation,

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

Yay!

I can't believe it!

I feel like the luckiest boy alive!

So exciting! Ferdinand and Evan!

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

Can you sign this, Giggs?

They even sign my shirt!

Hernandez?

Fabio, Rafael, can you sign this please?

Fabio, Rafael.

-My name's Raphael as well.

-Yeah?

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

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

Look at my autographs.

Oh, nice!

CHEERING

-I'm a bit scared.

-Yeah?

-I'm a bit nervous.

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

'Premier League champions, Manchester United!'

CHEERING

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

It doesn't get much better than this!

Really, really brilliant. A special day today.

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

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

it's just absolutely incredible.

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

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

It's a dream come true,

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

I've had a brilliant day today

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

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

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