Meet Mui Thomas, a Hong Kong rugby referee and special needs teacher with a rare skin condition.
The 22 year-old suffers from harlequin ichthyosis – an extremely rare, genetic disease that causes the skin to grow very thick, with deep, painful cracks. Wherever she goes, her pink scaly skin attracts stares.
But perhaps the most striking thing that one observes upon meeting Mui is her brazen confidence and energetic persona. She brushes off stares – though they do, of course, bother her – sometimes even offering a smile or a little wave in return. She speaks boldly and loudly, and talks about her disorder as if it’s an afterthought, or a minor inconvenience, rather than the crippling disease it can be.
Mui is one of the oldest people in the world with the disease. British woman Nusrit Shaheen is believed to have survived it the longest, at just 31 years old.
Babies born with the disorder often die in their early childhood without proper treatment. Fortunately, with medical advances – such as topical creams to keep the skin moisturized, and oral retinoids to slow down the growth of her skin cells – chances of survival have improved dramatically.
Her parents, Tina and Roger Thomas, adopted Mui in Hong Kong when she was three years old.
“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.
“We’ve also very much instilled in her [the importance of] enjoying the world. You know, the carpe diem thing. You don’t know what’s around the corner, for any one of us.”
Mui is currently a special needs teacher at the Rock Foundation in Wan Chai, and a referee for the Hong Kong Rugby Union (HKRU). She hopes to one day become a rugby referee for international matches, a goal she works towards by moving up the referee hierarchy in the city.
Earlier this year, the Hong Kong Rugby Union gave her the referee award for being “inspirational in overcoming life’s challenges and adversities.”
Mui gets infections once or twice a month, most of which she manages on her own with topical antibacterial creams. Her body is constantly covered in small abrasions slightly deeper than paper cuts, while she gets one or two more serious cuts a month.
“My parents always tried to distract me from my itchiness and my pain,” Mui told Coconuts Hong Kong, remembering her childhood.
“Usually they would try to make me laugh, and maybe do some coloring and fun things. They really are amazing, and I really would definitely not be anywhere without them because they really are my rock.”
When Roger and Tina first met Mui, they were volunteering as foster parents with no intention of adopting.
The couple would visit Mui every few days, but soon they were faced with a decision: Mui was moved to an institution, and Tina and Roger had to act fast.
“She was effectively being hidden away from the rest of society in a home for the mentally handicapped,” Roger said. “She has no mental handicap. Now, we had to make the decision.”
The adoption was finalized when Mui was three years old, and immediately society made an already tough job even more difficult.
“I would say the worst incident when a woman spat in Tina’s face, and accused her of burning Mui,” Roger recounted.
Then there were the medical issues: when Mui was four years old, she got an infection so severe that the doctors had unsuccessfully tried all but one antibiotic. Thankfully, the last one worked.
When Mui was 13, she was the victim of vicious anonymous cyber-bullying that drove her to suicidal thoughts.
“You lose the ability to trust people,” Mui said. “So for me, school, high school was very difficult.”
After the many cases of Mui being bullied, her parents realized it was time they step into the spotlight, after having shunned interviews with the media for years. They realized that the happiness of their daughter was not solely in their hands.
Since setting up a Facebook page and getting more publicity, Mui says she’s been touched, by example, by people from her past – some of whom she did not exactly see in a good light – reaching out to her with apologies for their previous behavior.
These days, she has people coming up to her on the street and contacting her online to tell her what an inspiration she’s been to them, and though she’s still getting adjusted to the attention, she plans to use her story to help others.
“I hope that people will be more accepting of those with visible differences and with special needs. And know that even though they look different, they’re still people.
“Hopefully, for people troubled with difficulties, our story can offer the sort of hope and support that would get them out and running again.”