Though Mui had been abandoned by her birth mother, Rog and Tina Thomas immediately fell in love with her. Mui had a strange condition that left her with red skin and doctors believed that she wouldn’t live very long.
Despite the doctor’s sentence, Rog and Tina wanted to give Mui the best life she could have. However long that life may be.
“We wanted to give her a family life in the time she had,” Tina Thomas told CNN.
So, Rog and Tina adopted Mui when she was 3-years-old knowing that could pass away at any moment. The couple discovered that their daughter had a condition known as Harlequin ichthyosis which causes the skin to regenerate 14 times faster than normal skin does.
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Source: YouTube Screenshot
Not only does Mui have bright red skin, but it’s also irritated, sensitive, easily infected and constantly sheds. The uncomfortable and painful condition was difficult to live with, but Mui is strong and says she doesn’t feel like she is in pain. She was always a happy child and enjoyed her childhood.
“I really don’t think I knew that I didn’t look like everybody else,” Mui said.
However, as Mui got older, life became more difficult for her. She was bullied and called a “freak” for being different. The bullying became so bad that Mui tried to be “normal” and stopped taking the ointments and treatments that kept her condition in check.
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Mui was so distraught over the abuse she was enduring that she even considered suicide. She dropped out of high school before getting her diploma instead. Mui said it was for the best anyway because the school she went to didn’t challenge her. She was constantly letting her disease get in the way of her growth.
So, Mui took charge of her own life and is now she is thriving against all odds. She got a full-time job working with people with special needs and trained herself to be a rugby referee.
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“The doctors were convinced that our daughter would die,” Tina explains. “Now she is 22 years old and the world’s first referee with Harlequin ichthyosis.”
Now at age 23, Mui is the fourth oldest person in the world with the condition and is an anti-bullying and Harlequin ichthyosis advocate.
“There is a light at the end of the tunnel,” Mui says. “There is happiness. It doesn’t just have to be a dark tunnel.”
You can learn more about Mui and her mission in the video below and on her website The Girl Behind The Face.
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