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  • Hello

  • 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!'

Hello

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    David Chou 發佈於 2021 年 01 月 14 日
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