When you’re a child, fitting in can be tough. Kids can sometimes be cruel or even judgmental, and there is so much pressure to be perfect on the playground. Typically, this pressure starts to fade away into adulthood; you don’t care as much about what people think, and you have your own aspirations and hobbies to keep you happy.
However, for Mui Thomas, fitting in has never been easy. The 22-year-old woman suffers from a rare genetic condition known as Harlequin ichthyosis. The condition causes her skin to be extremely thick- similar to fish scales. Her skin is raw, red, and very vulnerable to infection. Mui has to take two baths a day, each one about two hours long. She carries around a backpack filled with a special cream she has to apply all over her body to keep it from drying out.
Mui was abandoned at birth and taken in by a loving couple named Tina and Roger Thomas. Doctors predicted that she wouldn’t live long, but she ended up surprising everyone by thriving with her adoptive parents. The three worked together to manage her skin condition and work towards a happy, healthy life.
Even though Mui had support at home, people were not as understanding out in the world. She had a hard time making friends at school, and was even cyberbullied for her appearance.
"They'd say things like 'You shouldn't have been born', and very personal things that only people who knew me would know." she said.
Things got so bad that Mui stopped caring for her skin, left school, and even contemplated suicide.
Despite the challenges Mui faced early on, she decided to use her rare condition to do something positive, instead of letting it bring her down. She now has a full-time job working with people with special needs, and is pursuing a career as a public speaker. She hopes to inspire and empower people who are “visibly different”, like herself.
Mui’s parents could not be more proud of how poised, confident, and brave their adopted daughter has become in the face of such adversity. Her father published a family memoir about their journey, and she has spoken for TEDx Talks audience about her experience as well.
Mui’s father hopes she continues to pursue her goal of public speaking. "It's difficult for her because she spent so long denying it. The more she confronts it, the more she is aware of it, it will build confidence." he says.
It’s hard to imagine facing the struggles Mui has come to see as “normal” everyday. Sometimes it’s easy to forget how fortunate we are, and Mui’s story is an important reminder to always be kind, and not judge people for their outward appearance. True beauty is always found within, and from the looks of it, Mui has an inspiring and fulfilling future ahead of her.
Watch the video below to learn even more about Mui's journey.
