When Mui Thomas was born in Hong Kong in 1993, her biological parents gave her up. It was unclear whether she would live very long, having been born with a rare disease called harlequin ichthyosis, which made her skin flaky and raw.
She was going to be sent to a government-run medical facility, but thankfully, a British couple decided Mui deserved a family life for as long as she lived. Twenty-three years later, Mui is still alive and handling her condition better than anyone could have predicted!
Mui Thomas was born in Hong Kong 23 years ago with a rare skin condition called harlequin ichthyosis. The condition makes her skin thick, scaly and raw. Muis was given up by her parents and adopted by British expatriates Roger and Mimi Thomas. They hoped for the best, but had no idea what they were in for with their new little girl…
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Mui wasn’t expected to live past three years old, but she flourished in her adoptive home and learned to manage her skin condition, which requires that she takes a series of medications, bathe twice daily for at least two hours at a time, and frequently apply medicated ointments to her entire body.
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Adjusting socially was more difficult for Mui. In school, she had to constantly be accompanied by an educational assistant, which made it difficult to form friendships, and she was the target of bullying both in real life and online because of her condition…
In her darkest moments, Mui did consider suicide. As she got older, Mui learned to ignore the hate and throw herself into the things she loved like rugby and volunteering at a school for special needs students.
After she left school, Mui was directionless for a bit, but eventually turned her passions into her job. She was hired at the special needs school, and stays active in rugby both as a player and as a referee for younger kids.
Although she spent a long time resentful of her disease, at 23, Mui is learning to accept it and has even begun to toy with the idea of motivational speaking. After all she’s been through, and all she continues to go through each and every day, there’s no doubt that she would be great at inspiring others with her bravery and determination!
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Wow…I can’t even begin to imagine how difficult it’s been for Mui growing up with a disease that interferes with her daily life so much. That she’s learned to take it in stride should be uplifting to all of us!
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