Ruby is our HERO

Feisty and independent aren’t usually the words that people would think apply to a severely disabled child, but ever since my daughter, Ruby, was diagnosed with the neurological degenerative disorder Rett syndrome, she’s been proving people wrong and surprising them – even me.

Whether she’s using her special computerised eye-gaze machine to spell out ‘you smell’ to her daddy, John, 40, with a wicked glint in her eye, or arching her eyebrow suspiciously when I attempt to read her a book she doesn’t like – with every eye-roll and shake of her legs to say ‘No way!’, Ruby, now nine, has