Shana

I’m dying, I know what that means and I’m not really frightened like most people are. I saw death happen, it's just like going to sleep.

It wasn’t my fault Shana didn't wake up, I didn’t get into trouble for it, but I know that the carers were cross with me.

I heard them talking about Shana, how there would be an inquiry, I think I know what that means.

All the kids are dying here, that’s why we come, it’s called respite care, then your mummy and daddy can go somewhere without having to worry about you.

I have Down’s syndrome, so they think I can’t understand much but I’m a very.. Signiar, slnligner, no! no! singular person… that’s what Mr khan my heart doctor says anyway. He said I’m bright considering… I heard him though, when he told the nurse to play with me, I heard what he told my mummy, that my heart was broken and he couldn’t mend it, that’s why I get tired and out of breath. He said only a new heart would do, but they wouldn’t consider me, I think that means they won’t let me have a new heart because I am a sgnie, err.. S i n g u l a r person… I’m not sure.

The other kids don’t like Shana 'cos she's ugly and old and looks like a goblin, but she's only five, I love her 'cos she doesn’t mind if I get dribble over her when she cuddles me… When I asked mummy why Shana looks old she said it was 'cos she has pogera no! progeria.

I love Shana. When she cries at night, she'll come and get into my bed, but we get told off if we get caught. Last night she was all hot and sweaty and wouldn’t stop crying till I put my hand over her face when the nurse went past, I was so comfy I didn’t want her to go, so I kept my hand over her face till she went to sleep.

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