she has not been rushed to hospital once. The family’s motto is “give it a go”. And Mui does, despite daily physical challenges – she can’t sweat or control her body temperature and should avoid direct sunlight.
She’s inspirational for getting on and living life with a smile
Above: Mui and Dr Bramley. Left: With Sir David Tang.
who offered her services free. She has helped Mui with everything from blood tests to dental work. As a young child, Mui was hospitalised regularly. Since Dr Bramley came into her life,
“I get on and do it,” she says. “A lot of the time when I’m out, I don’t actually think about it. I deal with the consequences later.” Since leaving school she has qualified as a rugby referee and is now involved with the Hong Kong Rugby Football Union. “Mui wanted to play rugby, which wasn’t going to happen – no one is going to tackle a kid with such a severe skin disorder,” Rog says. “However, after she stopped complaining, we said, ‘Just get involved’. When she’s on a rugby
field, she’s not judged on her condition – she’s judged on whether she’s any good. Judged as an individual.” Mui lights up when she starts to chat about rugby. She’s bursting with enthusiasm for the sport and it shows. But her efforts on the field are not only striking for someone with Harlequin ichthyosis. Mui is one of only a handful of female referees in the male-dominated sport. She works full time as an educational assistant for The Rock Foundation, a facility that helps young people with special needs, and dedicates time to local charity Sailability, despite not being able to swim owing to her condition. Rog wrote the book because he believes Mui is inspirational – not because she has Harlequin ichythyosis, but because she tries. “She’s not inspirational for just scratching her backside,” Rog says. “She’s inspirational for getting on and living life with a smile and doing things like the rugby and Sailability. These are positive. It’s about doing something.”
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