The girl with a will to live: the love, hope and pain of raising Elsie – my one in 163 million daughter

She was born with an ultra-rare genetic disorder. After my decades working in film PR, I now face the biggest campaign of all: the fight for her life My daughter Elsie has beautiful curls – blond like a little Botticelli cherub’s, hair that someone dark like me could only ever dream of.

She laughs a lot, has a cheeky sense of humour and soaks in all the sounds around her – rustling leaves, the sea, a dog barking, children playing around a pool, me impersonating the alarm clock every morning, me impersonating monkeys. Indeed, me impersonating any animal. Sound is important for Elsie because she has a visual impairment and, while we know she has some peripheral vision, is legally classed as blind. As a…