Tina and Rog Thomas became the foster parents of Mui when she was only one and half year old. Abandoned at birth, the orphanage told the ex-pats living in Hong Kong the baby was not going to live for very long. The baby girl was born with Harlequin ichthyosis, a rare condition that makes her skin thick, flaky, and very dry. Nonetheless, by the time Mui was three, she was adopted by the proud parents. Mui has endured years of stares and bullying for looking different. But with the love and support from her parents, and her strong spirit Mui has thrived.Although given a grim prognosis, Tina wanted to take Mui home with her and her husband. “We wanted to give her a family life in the time she had,” says Tina.
Mui has to take two baths a day for about two hours each time. She must also carry three to four bottles of cream daily to keep her skin from drying out.
The Thomas gave their daughter a happy childhood. She did not realize she looked different from other kids.
When Mui entered middle school she faced a lot of cyber bullying. This made her want to end her life.
“Because I had no idea who was doing it and my tormentors were hiding behind a screen, I felt like I couldn’t trust anyone. To an extent, not even my own parents,” says Mui.
Mui was so tired of the constant mental and emotional abuse that she stopped taking her medication, applying her creams, and taking her long baths.
After 10 months of constant bullying, the police discovered the perpetrators were her own classmates.
Mui had the opportunity to share her story where she recalled her one of her dreams. “When I was a child, I once said, ‘Mummy, if there’s one thing I want for Christmas, it’s to have ordinary skin.'”
About three years ago Mui discovered her love for rugby.
She now works as a rugby referee. The first one in the world.
“All of my life, I wanted to get away from being some sort of Victorian freak show exhibit, even if it’s just for a little while. Then, three years ago, I found something that was both inclusive and welcoming. I discovered rugby,” explains Mui.
Her body cannot regulate body temperature. Therefore, she cannot sweat. Mui has to drink a lot of water to stay hydrated.
The oldest surviving person living with Harlequin ichthyosis is 31. Mui is 22, making her the fourth oldest person with the condition.
Besides working as a referee, Mui also works with special needs kids.
The family has written a book titled The Girl Behind The Face.
