The GuardianUK News & Comment• 1 min read

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

Published 16 September 2026, 5:00am

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…

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