Mui Thomas hasn’t had an easy life. The 25-year-old woman was abandoned by her mother at birth, mercilessly bullied by classmates at school, and diagnosed with a severe genetic disorder boasting a mortality rate of 50%.
When she was born, Mui looked very different from other babies. Despite Mui’s somewhat shocking appearance, Rog and Tina Thomas fell in love with her when a social worker brought the girl to their door. At the time, Mui was only 1.5 years old, and her health was quickly declining. Doctors told the family that she did not have long to live.
“We wanted to give her a family life in the time she had,” her mother Tina told CNN.
Somehow, with the love and support of her new parents, Mui managed to survive, but she wouldn’t be officially diagnosed until she was 3 years old. At this time, it was revealed that Mui had harlequin ichthyosis.
Harlequin ichthyosis is a severe genetic disorder that mainly affects the skin. “Infants with this condition are born with very hard, thick skin covering most of their bodies. The skin forms large, diamond-shaped plates that are separated by deep cracks,” the U.S. National Library of Medicine explains. As the photos show, it results in bright red, raw skin that is particularly prone to infection; CNN describes it as resembling “fish scales”.
Together, Mui and her new family learned to manage her harlequin ichthyosis; her usual routine still includes two 2-hour baths a day and constant reapplication of creams and moisturizers to avoid cracking. Still, during her childhood, Mui tells CNN, “I really don’t think I knew that I didn’t look like everybody else.”
When Mui got to middle school, she started being cyberbullied and picked up on for her appearance. Her family had to call police to intervene, and it was only after an investigation that Mui found out the perpetrators were people she thought had been her friends. The events led to severe depression and, at one point, Mui even contemplated taking her own life.
“It made me very wary of everybody,” Mui tells CNN. “Even when people tried to be nice, I didn’t repay it. I didn’t trust them.”
Nowadays, Mui finally feels comfortable in her skin, and at 25 years old, she has made history as the 4th oldest living person with her condition. She’s happy to have discovered her passions, and she now spends her days refereeing for children’s rugby and spreading awareness of what it’s like to live with a visible disability.
It’s wonderful to see such a young woman taking charge of her life despite all odds, and now using the lessons she’s learned to help others. See her inspiring story, in full, below!
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