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Hello my name is Ellie and I’m 7 and I live in Bicester.
I live with my mum, my dad and my special brother, Thomas.
This film is about me and my brother.
Testing. Testing.
Put your glasses on Thomas.
Is that better?
You can see now.
My brother is 4 but he is not growing so he looks like a 1 year old.
When he grows older he will still be that size.
When my brother was born we thought he was OK, and I was only 2 or 3 then.
So we went to a special doctor and he said that he’s got disabilities and he’s disabled and he’s got Cockayne syndrome.
Cockayne syndrome is a genetic condition.
Tom got it from my mum and dad because my mum had a good gene and a bad gene,
and my dad had a good gene and a bad gene, and he got the bad gene and bad gene.
You can’t catch it because genetic means you are born with it;
and no one can catch it because you are born with it and you stay with it.
Can you sit that way? Come that way.
Your head is chopped off.
Is it working alright?
Can you hear that?
Look inside the camera or at me?
What is Cockayne syndrome? Can you explain it a lot?
A lot.
Cockayne syndrome is a rare genetic premature ageing condition.
Cockayne syndrome is a degenerative condition,
which means that Thomas will gradually get worse over time and will lose skills over the next few years.
So Thomas will gradually lose his hearing, his eyesight, his ability to walk and talk.
I think my brother has a very difficult life.
My brother can hear and look, but he can’t hear and look very well.
So he needs to have some special glasses and special hearing aids.
He’s sometimes quite funny, like last night when he was trying to bite me on the ankles!
My brother can walk around.
It’s just when he goes out he’s a bit wobbly and he’s a bit trembly when he gets out of bed, so he’s like this.
When he’s eating he’s like this.
And then when he has his frame he’s like this, and walking along like this.
And he can also run in it as well like this, he’s like this.
He’s a funny little character.
He likes to laugh, he likes to cook, he likes to ride his bike.
He goes to an ordinary school – the same one as me – and his friends don’t really mind.
But it’s just the big ones that are like ‘ha ha, look at this boy, la la.’
What do they say?
Oh, mean things about him.
It makes me feel really upset and my friends are like ‘ooh I want to chop their heads off.’
When he does get older and the people laugh, then he will understand and his feelings will get hurt.
So I don’t like seeing him upset because it makes me feel upset.
So if you are one of those persons, can you stop it please?
He’s just the same, but just a bit different from you.
Some people might be born little, some big, some wide, some thin,
and some like Thomas.