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.

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.

My illness killed my kidneys.

I had no idea what kidneys were.

I thought is it a chocolate or what is it?

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.

But until the operation,

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

This is my dialysis machine.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 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.

Today is the operation day.

I'm feeling quite nervous but very happy.

Dad has to be brave first.

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.

My surgeon 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.

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.

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.

The kidney looks very nice.

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

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.

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?

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.

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.

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.

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

so, I can say I've got my son back.

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.

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!

'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.

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.

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.