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The hereditary skin disease called ichthyosis graves is one in which the skin grows ten times faster than normal.
This leads to constant tearing and bursting. The tearing can be very painful and is especially prone to infection. Unfortunately, most who have this disease, will end up dying during childhood. Fortunately, 22-year-old Mui Thomas from Hong Kong is the exception.
Tina and Roger Thomas, emigrants from Germany and Great Britain, were taken aback twenty some years ago by this little baby when they were volunteering at a hospital. They were puzzled why she was destined to be placed in a home for the mentally disabled, when her mental functions were fine. Roger had the following to say regarding their feelings about Mui being taken away:
“There she would be hidden from society. But she is mentally completely healthy. We now had to make a decision.”
The decision would be to adopt the girl.
Regardless of the stares and questions about her condition, Mui has actually become a strong and happy young lady. She simply reacts to the stares with a happy wave or smile. It was not always like this though.
During school, Mui was bullied badly. They even wouldn’t allow her to enter a certain part of the school building because one boy claimed he was frightened by her. Roger remembers the difficult challenges faced during those years:
“A lady once spat in my wife’s face and accused her of having burnt Mui. But we have always shown her how important it is, to enjoy the world, to use the day. While you never know, what’s waiting just around the corner.”
Today Mui works as a teacher for children with learning difficulties in Hong Kong. She’s also extremely athletic and serves as a rugby arbitrator. Rugby is a great passion to Mui. Her aspirations with the sport include blowing the whistle in the international games.
Mui has this to say on image and other people’s reactions:
“People with different appearances are often scared to go out and show the world what they have to offer. But I was always like this, and have simply done whatever I had to, regardless of what other people think.”