19 February 2018 - They have a deadly genetic disease their parents say is being halted by Brineura, but officials have ruled the high price can't be justified.

Amelia Carroll is nearly five and quite the live wire, quick with a giggle and a Disney song, and quicker still on her scooter. She loves Taylor Swift and One Direction and has levels of energy her parents can't keep up with.

'She was up at 4.30 this morning, sitting on top of Mike, going 'Daddy, Daddy, Daddy',' laughs her mum Lucy.

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