My name is Millie. I am 10 years old.

This is me when I am 3 years old. I love to play and dance.

I have been coming to hospital for a long time

after Mummy told me I was born with a big tummy.

I am afraid the results are conclusive.

What is it?

It's Niemann-Pick Type C.

That's a type of neurodegenerative disease

which means that Millie will start to decline both mentally and physically eventually.

Jesus we have been passed from pillar to post for years, and now -

It can't be true. He's wrong isn't he?

I want a second opinion.

Of course, you may have as many opinions as you like and I'll help organise that for you

but I have to say, I think the results will all be the same.

I am so very sorry.

They say there isn't much wrong with me. It's nothing bad.

They have done lots of tests, and now they know what is making my tummy so big.

Everyone is really nice to me at the hospital.

Mummy cried that day. So did Daddy.

I don't know why. Daddy never cries.

Mummy says he's not crying, he's laughing. It's a strange laugh.

Hello, my name is Millie. I'm 10 years old.

I am older now, and I am finding it so hard to learn.

To concentrate. I feel strange sometimes too.

I'm ever so clumsy.

I can't run as fast or climb as high as my friends.

My legs get wobbly and I have to take my medicine.

I really want to be a dancer when I grow up.

But I can't dance now, because of my wobbly legs.

I am not sure what is wrong with me

but I know I am not like the others.

Mummy and Daddy think they gave it to me

and that makes them sad.

Come on let's go!

But it will be alright when I get better.

They will be happy again, like they used to be.

You'll see, everything will be alright.

Hello, my name is Millie. I am 10yrs old.

I keep coughing when I am eating and drinking

and I keep forgetting things.

I have to have physiotherapy now, because of my hands

sometimes they do things I don't want them to do.

And I have to have speech therapy too, as they can't tell what I saying.

We have taken blood and done some other tests.

And what will that show?

Perhaps how fast the disease is progressing.

Perhaps?

Well you have to understand, not many people have heard of this disease. Even doctors.

There are only 80 cases in the UK.

Perhaps a thousand worldwide.

How are the seizures?

She's having 5 maybe 6 a day.

And how are you coping with them?

How do you think?

Well we'll take a look at the medications whilst Millie's here.

And you, how are you coping?

Tablets help me sleep, sometimes.

I work part time now

we have to be there for Millie as much as we can.

You need to make your memories now, for the future.

Leave it. You will only upset yourself again.

No, I need to stop being in denial and face this.

There are trials in America, something called cyclodextrin, we could go there.

You know as well as I do the damage done is irreversible.

Maybe so, but they might be able to stop further progression.

No they won't.

I've told her we're going.

How? We can't afford to go to America.

We can remortgage!

No I only work part time, we can't afford this.

Don't you want to help her?

Of course I do.

[CRASH]

Life began to get really hard over the next few years.

And Mummy and Daddy got me a wheelchair, because I struggle to walk on my own.

Eating my favourite food is not so much fun anymore

because I keep choking, and it scares Mummy and Daddy.

I used to love to dance and sing

but now I struggle to remember the words.

And I need help with my speech.

Mummy says I can fight anything if I just keep going.

She cries alot.

Why is everything becoming so hard?

Each year it feels like I lose another part of me. I can't do the things I used to do.

I went to hospital that day, and life changed for me.

That hospital visit was followed by many more.

Hello, my name is Millie. I'm 10 years old.

I'm older and feel strange most of the time now, not like myself.

Like I am a different girl, not Millie anymore.

Hello, my name is Millie. I'm 10 years old.

I'll always be 10 years old.

'What have you got?'

'Pack lunch!'

'Are you going to have a fun time?'

'Yeah!'