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

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 result, she uses her tongue to check her environment. When she’s excited it sticks out, tasting the air around her, licking anyone close, sensing space. And when she likes the taste of something she keeps her tongue out until you give her more. This is how we know she likes lollies.

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