Parents of Hong Kong’s ‘Girl Behind the Face’ share their story for the first time
Mui Thomas’s story of living with a rare skin disease has moved many. Now, her adoptive parents share why they ignored advice to ‘walk away’
Mui Thomas is, by any measure, a remarkable woman.
Now 33, she is believed to be the world’s fourth-oldest survivor of Harlequin ichthyosis. This extremely rare genetic disorder causes the body to be covered with thick plates of skin – a condition so severe that when Mui was born in Hong Kong in 1992, it was considered universally fatal.
She took part in the fitness competition Hyrox in July 2025 and ran her first half-marathon at the Standard Chartered Hong Kong Marathon event in January. Many of these achievements are captured on “The Girl Behind the Face” website and social media accounts.
But for most of that journey, her parents – themselves remarkable people – have remained visible by association, but invisible as individuals. Their trauma, exhaustion and complicated history: none of it was ever really asked about.
“People would always ask, ‘How’s Mui?’ Or go straight into assuming we should be sad and depressed and all over the place,” says her father, Rog Thomas. “Very occasionally, you’d get asked, ‘How are you guys?’”