Being optimistic is what characterizes the young and exceptional lady Mui Thomas, the girl fish that does not look like anyone else and made believe that miracles exist; she suffers from a skin disease of genetic origin and causes her skin to become scaly and thick like a fish.
This 22-year-old young Chinese suffers a rare genetic disease called ichthyosis Harlequin. Scientists are not yet able to determine the real cause of this condition, where is only known that 90% of all babies born with this diagnosis, do not survive. Any contact with the outside world is painful, because their skin is quite delicate.
More than twenty years ago, when the biological parents of Mui saw the appearance of their daughter; they didn’t want to face the hard life that they were going to live, so they abandoned her in the hospital. It was then, when Roger and Tina Thomas; who lived in Hong Kong, decided to become foster parents. Tina met Mui in the Duchess of Kent Children’s Hospital in Pok Fu Lam with a few months old, and though she rejected her presence at first by her physical appearance like a fish; the couple made the big decision to adopt, establishing a strong bond over time.
Mui had to learn to survive her terrible disease in this cruel world. Many people did not believe what they were seeing, others fled from her, and others didn’t even imagine that there could be a condition like this. Her classmates made fun of her calling her “the girl fish.” However, thanks to her brazen confidence and her strong personality, she was able to overcome resentment and always answered with a smile the vilest insults.
She is one of the oldest people in the world with harlequin ichthyosis. Until recently Mui and her parents thought she was the only case in Asia; however, they have heard from others in Southeast Asia. Infants with this disorder often die in early childhood without a proper treatment; she cannot sweat but she can drop tears.
Now, she teaches children with learning difficulties in Wan Chai district of Hong Kong; she is also a referee in the Rugby Union of Hong Kong (HKRU), being this sport her great passion and in the Rugby field, nobody can harass her. Her dream is to be a referee in international matches.
Miui has become a safe and happy young lady despite the stares and whispers that gets when she walks through people. Her reaction now is to smile or say hello. Earlier this year, the Rugby Union of Hong Kong gave her the prize of referees, as a source of inspiration in overcoming challenges and adversities of life.
ALFA