Mui Thomas - the inspirational rugby ref with harlequin ichthyosis

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Dec 22, 2014
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Saw this on Reddit, had to share with you guys.

http://hongkong.coconuts.co/2015/10...eferee-big-dreams-despite-rare-skin-condition

Read the entire article! It's a good read, and a touching one... And much longer than my quotes. So worth it.


At the Annual HKRU Referee Dinner, Mui speaks to a woman who approached her to tell her that she's an inspiration and to ask for a picture with her. (June 6, 2015)


Anonymity is not a luxury allowed to Mui Thomas. Wherever she goes, the 22-year-old special needs teacher and rugby referee’s pink, scaly skin attracts stares.
Mui has harlequin ichthyosis, an extremely rare, severe genetic disease that causes the skin to grow very thick, with deep, painful cracks. The name of the disorder itself, “ichthyosis” – which comes from the Greek word for “fish” – refers to the “scales” that cover sufferers’ bodies.
Tina and Roger Thomas, aged 47 and 52, who adopted Mui in Hong Kong when she was three years old, share her optimism.
“If she maintained good healthcare then there was no reason that she shouldn’t have just as much opportunity as another kid,” Roger explained. “There is every reason that we can hope for the future.”
But when she was 13, Mui was the victim of vicious anonymous cyber-bullying that drove her to suicidal thoughts, with the police having to get involved on one occasion.
"You lose the ability to trust people,” Mui said.
(I tried picking the best image of her from the article for the thread.)

Wow. Props to her for having the willpower to be a great person despite the way she's been treated, and to do something as physical as a rugby ref with her disease. I played rugby in high school and I know just how hard some of those refs work.

Her parents too... Fantastic people. Good on them.

Here is her petition to end shock videos on YouTube. She created this after seeing her own pictures in videos about TOP 15 RARE BIRTH DEFECTS and other videos. It's for a great cause and will help raise awareness for people who suffer from harlequin ichthyosis.

I searched Mui Thomas, and didn't find anything. Please lock if old. :)
 
Jul 6, 2015
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Is this not an extremely hard disease with almost no survivors? Reading up on wikipedia seems like most people born with it only lives a few days, at most some weeks.

This woman needs to get all the praise in the world. It really is astonishing and very powerful to see how she manage to cope with it and live a relatively normal life. I think whats the most inspiring is how positive she seems to be. There is a video of a speech by her up on youtube.
 
Dec 22, 2014
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Is this not an extremely hard disease with almost no survivors? Reading up on wikipedia seems like most people born with it only lives a few days, at most some weeks.

This woman needs to get all the praise in the world. It really is astonishing and very powerful to see how she manage to cope with it and live a relatively normal life. She must be very positively spirited.
The oldest recorded person ever with the disease was 31. It kills the majority of the victims at birth.
 
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