Mui was born in Hong Kong with a rare skin condition called Harlequin ichthyosis. No one expected her to live for very long, and as a result she was abandoned by her parents to the care of strangers. Instead of treating her with hope, they treated her as a burden. That is until two expats, Tina and Rog Thomas met her when she was just over a year old. They just wanted her to have a family in the short amount of time that she had left. When she was 3 years of age, they formally adopted Mui, fully expecting for her to have a short life full of love and devotion.
To their joy, she lived past the next year…and the year after, and the year after that as well! With her condition came an array of accommodations that had to be made to make her life livable, and they were all too happy to help her along on her journey. Mui must bathe twice a day, and each bath usually lasts around 2 hours. She must also constantly apply lotions and creams throughout the day to prevent her skin from drying out. Mui’s thick, dry, and flaky skin does not allow her to sweat, although she can shed tears.
Mui was bullied as a child growing up, leading her to feel as though she did not reach her full potential during her earlier years in school. Teachers coddled her and her fellow students were terrible, pretending to be her friends and attacking her in any hurtful way that they could. So she began to fight back. After a tough fight with suicidal thoughts, she has become determined to live her life to the fullest.
Mui plays sports, has a full-time job, and is well on her way to becoming a public speaker. She wants to inspire others who live with physical “visible difference” and to help in any way that she can.
For a long time, she could not accept that she was different. In fact, her dream was to become a model. She never saw herself as different, and it was very hard when other people would put her down because of the way that she looked. Due to this mentality, she has dreams of starting a fashion show specifically for people who live with a physical difference. She wants to live her childhood dream.
Mui is not alone living with this condition, but she is one of the oldest at only 22 years of age. The oldest person living with this skin condition is only 31 years old. As she copes with her condition daily, there is hope that she will be able to live a long and full life, full of happiness and hope!
While the journey has been tough, she is surrounded by a loving family and is carving a life for herself that will make her feel happy and fulfilled. She is an inspiration, and I can’t wait to see what she does next. This story makes me feel so proud! Despite adversity, harsh judgment, and physical limitations, Mui will not let any of it get in her way! She is unstoppable!
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