Despite a rare skin condition, Mui Thomas is living the dream

September 5, 2019

 

It's 30 degrees outside in Hong Kong. 

 

Despite the blistering heat, it’s game day at King’s Park and our eyes are immediately drawn to the pitch.

 

In the middle of the grass, a group of 12-year-olds are coming into contact at full force to score a try. Almost unnoticed, a small woman with a whistle in her hand has been running after them for 18 minutes straight.

 

Mui Thomas' looks don't matter here. The only thing that matters, is if she can keep up.

 

For what feels like ages, Thomas feels like she's going to die. She's overheated and she knows that she's probably going to run a high fever when she takes the hour-long bus back to her home in Sai Kung. 

 

But back in the centre of the turf, Thomas doesn't care. This is living in the moment, she tells herself. And she's going to finish the game. 

 

Mui on refereeing duty.

Photo courtesy of Mui Thomas 

 

In her 26 years, pushing forward is all she's ever known. She's accustomed to this. Her parents, Tina and Rog Thomas, would never let their daughter stay at home and feel sorry for herself. From a young age, they ingrained into their daughter the idea to never sit back and think, "No, I can't do it." 

 

Since she was little, she'd look to her Welsh father and his deep love for rugby. Throughout secondary school, she'd watch her friends who were all invested in the game. Before she became the world's first rugby referee with Harlequin Ichthyosis, she wanted to play the high collision sport. After all, why not? 

 

But when you look to the field, you might never see her running around with a ball, because her prominent condition and her then brittle bones wouldn't allow it.

 

Of course, while that had broken her dream of playing rugby, you can look a little closer from the sidelines of the pitch and notice her running the entire game instead. 

 

Mui with her parents, Rog and Tina Thomas.

Photo courtesy of Mui Thomas 

 

Contrary to popular belief, Thomas’ journey was no overnight success. She fought for years to earn her spot on the field, like everyone else.

 

This is Hong Kong after all; the stakes and intensity are much higher in a small, yet competitive city. In fact, Thomas never held a whistle until she went through two years worth of paperwork, became a dedicated assistant on match days and helped with endless ad hoc duties at the Union. 

 

And contrary to mass media coverage, this isn't a tale of invincibility - it's one of perseverance. Thomas still wishes she could run more than 18 minutes without dying. She trains daily to do better on her fitness tests and consistently studies her law knowledge. While she knows she might never get an international cap, there's no harm in trying after all. 

 

"The thing is because of my skin condition, I still have a lot of limitations. It can still be quite difficult for me. That's why I stick to U12's. I don't know if it's embarrassing...do you know what I mean?" Thomas explains.

 

"It's like, when I say 'I'm a referee,' people immediately ask, 'Oh you do big games and stuff like that?' But I don't. At the same time, I'm still embraced by the Rugby Union."

 

Mui at the Beach 5s.

Photo courtesy of Mui Thomas

 

"When I realized running around wouldn't be the smartest of things, the Union didn't drop me like a sack of potatoes. They found ways to help me be involved. They've been amazing even though I drive them insane, because I'm always that person to ask, 'Is there something for me to do?'" Thomas said. 

 

And at the Hong Kong Rugby Union, there always is. With programs like the Deaf Rugby and Operation Breakthrough, their diverse and inclusive environment holds its doors open to anyone looking to be involved. 

 

This opening was all Thomas needed to get her foot in. She eventually caught the eye of Dai Rees, who helps manage the Union and coincidentally happened to be a Welshman like her father. 

 

"She'd turn up to Hong Kong rugby completely engaged with everything," Rees said. 

 

After learning more about the Thomas family, he recognized something remarkable in her that personally connected with him.

 

Mui in action.

Photo courtesy of Mui Thomas

 

"You know, throughout the years, you'd see sometimes that kids would be frightened by her appearance. But instead of being affected by those kinds of things, she was strengthened by them instead." Rees said.

 

"So from there, it was a conscious decision from the start to ensure she had the support she needed from the Union." 

 

Rugby was never a turning point in Thomas' life; it was a part of it. An unconventional safe haven for many, Thomas claims the Hong Kong Rugby Union brought her back from the torment she's received throughout her life.

 

While the Union's support has continually inspired her to push through like her parents always told her, she didn't realize she had been been inspiring the Union herself. 

 

"It's a privilege to know her. She's become a big part of my family; she's good friends with my daughters." Rees said.

 

"I've had a background of working with special needs in the past as well, so working with Mui has always come from a place of love. She's just a talented young girl making a big impact on everyone here." 

 

Mui with Dai Rees.

Photo courtesy of Mui Thomas

 

From then on, Thomas slowly became a familiar face at the Hong Kong Rugby Union.

 

On Saturdays, you can catch her at King's Park helping the Union film their other developing referees. On Wednesdays, you can find her training into the night with her fellow referees and then bonding over dinner. On match days, you can watch her refereeing a U12 game standing her ground, like she has always done. 

 

And at the Hong Kong Sevens, you can almost guarantee she’ll be there making sure the global stage is running smoothly (and for the past five years, it has).

 

"You don't have to be on the pitch to be involved. You don't have to run around with a whistle. You don't have to be tackling people. You can just be on the sides and you can actually still make a contribution." Thomas said. "And I think that's the great thing about rugby, it's inclusive."

 

Mui snaps a selfie with Hugh Watkins. 

Photo courtesy of Mui Thomas 

 

According to Thomas, it's the support from Rees and others that have kept her going. Moving to Hong Kong five years ago to be the Union's Head of Match Officiating, Hugh Watkins connected with Thomas after learning her father was Welsh as well.

 

"Mui is a character in her own right. Her condition never bothered me in terms of what she had to contribute to refereeing. She was no different to the 99 other referees." Watkins said. 

 

"And a lot of work is not actually on the pitch, it's actually in the administration. You need people like Mui behind the scenes to help the games run successfully." 

 

"Even though she knows she might not be able to go further than where she's refereeing now, she works hard. She attends every training session and she loves the environment. We all treat her the same. She's one of the guys. We respect her and she respects us." Watkins said. "She's contributed a hell of a lot, on and off the pitch. I'm glad that we've made a difference to her and give her the confidence and boost that she deserves."

 

Mui takes charge of a USRC Tigers minis match. 

Photo courtesy of Mui Thomas

 

"And I'm grateful to them," Thomas repeats, again and again. 

 

Sometimes, however, it's easy for Thomas to doubt herself within a sport that contrasts her very own skin condition. 'Will I ever be as strong as them?', 'Will I ever measure up to them?' are questions that cloud her mind.

 

Despite being recognized as the positive, 'go-getter' that she tries her best to relay, she is often reminded of her reality. 

 

"I sometimes feel like I'm still down there." Thomas said. "It's hard for me sometimes to accept but I think having the support of the people around me, encouraging me...I've talked about it a couple times with my parents, the coaches and the rugby guys. It's all about the support."

 

But Thomas’ limitations never became a perpetual obstacle. From 'down there', Thomas influenced aspects of the Hong Kong Rugby Union that subsequently influenced the hearts of many people working there. And for the next generation of kids who may have illnesses, disabilities or just ones looking for some hint of hope, she's living proof to them that it's possible to go out there and live a life. 

 

Mui embracing her role on the pitch. 

Photo courtesy of Mui Thomas  

 

"I've been very lucky," Thomas repeats, again and again. 

 

"A lot of people with Harlequin Ichthyosis and disabilities don't necessarily think of team sports as a possibility, but I've done it. I want to be the one to say, 'I went out there and did what I could.'" Thomas said. "I've been included in so many opportunities and I can thank Dai Rees and Hugh Watkins for giving me them. Without them I think my life would be different. I think it would be more shallow and a lot less supportive." 

 

Today, Thomas continues to pass that support on through her family initiative, 'The Girl Behind the Face,' to share that same hope and inspiration she's been given throughout her life by her parents and the people around her. No doubt, it might be scary to go out and take risks, according to Thomas, but she wants to emphasise that nothing is impossible. Because of that exact belief, the Thomas family is using their platform and increasing visibility to spread awareness both in Hong Kong and around the world. 

 

"If somebody said to someone, 'No, you can't go out and play with everyone else,' or 'No you can't do this, you can't do that,' I want them to be able to say, 'Well there's a person in Hong Kong who's a rugby referee and she going out there and running around, why can't I?'" Thomas remarks. 

 

Mui at the Hong Kong Sevens. 

Photo courtesy of Mui Thomas 

 

"I don't know if it's a good thing or a bad thing, but when you're touted as the first person in the world with Harlequin Ichthyosis and a rugby referee it's a scary thing, but it's also a big honour."

 

The pitch is Thomas' territory. And surrounded by a supportive rugby community, she's here to stay.

 

So if you ever spot Thomas on the field, the only thing you'll notice is a young woman demanding the world to give her what she had always deserved: a place to belong. 

 

"If I can continue to be involved in the Union, then I’d be really happy. If it doesn’t and things start to phase out then, to be honest with you it would be sad, but at the same time I’ve done pretty much everything that I could ever wish to do." Thomas said. 

 

"Just because I have a skin disorder, doesn't mean it's going to hold me back."

 

 

 

The Girl Behind the Face is an initiative set up by Tina, Rog and Mui Thomas to raise awareness of visible differences, commitment and cyber bullying among the general public and decision-makers. Please help support the Thomas family by clicking on the following links: 

 

FB: https://www.facebook.com/GirlBehindTheFace/

Website: https://www.thegirlbehindtheface.com/

 

 

Tags: