A mother recounts advocating for her daughter Elsie after an ultra-rare genetic diagnosis, including the fight to secure care.
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…