My daughter Amy Reyes, who has died aged 17, was unable to talk – but she could communicate. She could let us know of her excitement at a familiar piece of piano music; her enjoyment of the sweariest of Lily Allen’s songs; her approval of particular people and boredom with others; her dislike of getting out of bed on cold dark mornings; her disdain for anything she deemed too try-hard. She was extraordinary.
Her life was made hard by Rett syndrome, the neurological disorder she was diagnosed with shortly before her second birthday. It caused havoc with her brain and body. But her essential Amy-ness always shone through. She was a girl who loved music above all things, especially the piano. Sitting beside her father, Eduardo, as he played, her face would light up with joy. We were certain that, if her hands had worked, she would have been a pianist herself.
