Mui Thomas

Mui Thomas’ skin grows fourteen times faster than normal. She can’t sweat, kids (and parents) have pointed at her in the street, her bones have been so brittle they were compared to that of a 110-year-old and, put simply, doctors didn’t expect her to survive. Yet, the match official is living her best life and, she says, rugby has played a huge part in that.

The doctors said the 18-month-old little girl would not survive infancy. Once her birth parents discovered she had the genetic disorder harlequin ichthyosis, they abandoned her, leaving her in the hospital in which she had entered the world. They’d already had a daughter who had succumbed to the same condition at birth years before, so this new baby became a ward of the Hong Kong government. 

The condition meant her skin grew fourteen times faster than normal, wrapping tightly around the body, often affecting internal organs, restricting breathing and making the ever-cracking skin susceptible to infection. At the time it was considered fatal, with infection and respiratory distress striking the lethal blow.

Mui Thomas is now 28 years old. She’s one of only about twenty people in the world to have harlequin ichthyosis [only 200 have ever been reported] and she’s one of the oldest, well, specifically the fourth oldest, with the veteran of the group 36 years of age.

She’s also a match official with the Hong Kong RFU, a yoga teacher, and a special needs carer, a job she’s literally just returning from as we talk. “I look after a guy who’s got dementia,” she explains, “but it’s really early onset, he’s only 33, so occupying him is my main gig. Then I teach a bit of yoga too, but that’s not really a big thing right now [due to the pandemic], and I’m a rugby assistant, but I’ve not been doing much of that really either.”

Rugby has meant so much to Mui. “It’s the community, number one,” she says, “rugby has given me a massive community. I like to say, and I don’t know if it’s exaggerating, but rugby has saved my life in a way because people are there to help you. 

“For me, I’ve gone through some pretty rough times, and rugby is what has helped me get back up there and feel like I can carry on.”

To understand what Mui – recently shortlisted by Asia Rugby for their #Unstoppable campaign – has been through, we have to go back to the beginning. A playroom in a convalescing hospital and an eighteen-month old Mui. “My birth parents couldn’t take me home,” she says. “They were very negative towards the prognosis, but they had some pretty crap situations regarding babies when I appeared. I did have a sister who had the same skin condition, but passed away at birth. You can imagine with a kid that’s passed away with this skin condition, then they’re not entirely confident about what was going to happen, so they left me. I was still fighting, kicking, screaming, and doing all that jazz, and my parents met me when I was one and a half.”

Rog and Tina Thomas, originally from Britain and Germany, but now bona fide Hong Kong residents, have their own stories to tell, with Mui’s mum Tina the granddaughter of a Holocaust survivor. Both of them work on the family initiative they’ve formed, The Girl Behind the Face, which focuses on standing up for others, covering issues such as cyber-bullying. “They met on a Schweppes TV commercial in Hong Kong,” explains Mui. “They met on set, and were engaged within two weeks, my dad was literally just doing the commercial to get extra money for a pair of shoes, but my mum was a model.”

They wanted to give back by volunteering, which led them to Mui, through fostering. “They wanted to emigrate to Australia,” explains Mui, “and actually had no desire to adopt, but then my parents met me, and they were taken with me, I suppose.

“Because doctors said I wouldn’t survive for very long, my parents wanted to make sure I had the best opportunities in whatever time I had left.”

Creating a bond with Mui was far from straight forward. “I wasn’t easy to deal with because I had been abandoned,” she says. “People came to see me, and they were unable to form a trust, or any bonds. A lot of professionals call it reactive attachment disorder, when a child has been deprived of a mother’s love or touch in the formative years. It’s very prevalent in adoptive children basically.”

Rog and Tina would build up the trust of Mui through weekend stints of fostering. After one of those weekends came to an end, the hospital suggested she might stay with them permanently. “My parents still like to joke, ‘this is one very long weekend’.”

Without doubt, throughout Mui’s stories, always peppered with tales of her parents, the former Schweppes pin-ups appear to be the coolest of couples. “They are amazing,” says Mui. “I’ve given them so much grief over the years. I was still a kid, I was still mouthy and an absolute moron at times, but my parents did a big thing of not making me feel like I was special or stood out. They are very big on ‘let her live her life’ and ‘give things a go’.  There have been times when things worked out, times when we would laugh, and think ‘well maybe that’s not going to happen’, but my parents are a big reason why I’m here today.”

From a young age, Mui couldn’t ignore her condition. Not only due to the physical side, but the reaction of others. “So many people think, ‘oh my God she’s been burned in a fire’, and they’re not entirely wrong, they’re perfectly entitled to think that,” she says, matter-of-factly. “I’ve had situations where mothers would cover their kids’ eyes when they saw me and lead the kid away. I’ve had kids staring and pointing and then the parents joining in and going, ‘wow’, and staring and pointing too.

“I’ve had a lot of shit in public,” she adds, succinctly. “I think that has made me a little more closed off and not wanting to socialise that much, but I think now, because of rugby, I’ve met a lot of people, we do stuff that, believe it or not, does not always involve the oval ball. And the thing I’ve realised with not just rugby but other work I do, is that people are starting to understand what is right and what is wrong. Nowadays, I know people who will actually stand up for me when they see a parent or kid being an arsehole, I don’t always have to handle it, although my friends don’t always handle it well; they might be a more aggressive than I’d prefer them to be, but I know they’re coming from a good place.”

This hasn’t always been the case, even from those who should know better. Mui’s worst times at school came when she was just reaching her teens. “I went through a massive, massive stint of being bullied in school, both face to face bullying and online,” she says. “It got to the point in both situations where you turn around to people that you thought were your friends and you’re like ‘are you the one who is behind the computer screen or writing notes about me?’ I didn’t trust people, and I tended to retreat on my own. 

“There was one particularly bad situation in year eight or nine, I was on Messenger, and you don’t always listen to your parents when they say don’t accept invites from people you don’t know, and a couple of people, hiding behind computers, took it upon themselves to ambush me, saying stuff like: I should never have been born; I was burnt; nobody wants me; that my parents felt sorry for me so they adopted me; and nobody wanted to sit where I sat because another thing with my condition was that I shed skin. There was a lot of stuff like that, a lot of really hurtful stuff, online, and in person. 

“There was a girl in my school who had a ‘fear’ of me, so every time she saw me, she would turn around cover her eyes, run away, flip out. My teachers at the time never really understood what was going on and there were times when, I kid you not, they actually told me to avoid going to places where this girl would go, which is really unfortunate because that was where my lessons were.”

Surrounded by cliques, unsure of who was a friend and who wasn’t, Mui would instead find herself hanging around the teacher on duty during breaks. “I figured that the older people were the less likely they were to bully me,” she says.

As with any ex-pat child in Hong Kong, Mui’s introduction to rugby came through the sevens, as she recalls sitting on her dad’s shoulders in the iconic South Stand and catching sponge rugby balls fired into the crowd.

Her school was a big rugby school, often finishing early on the Friday of the sevens and arranging buses to take the kids to the Hong Kong Stadium. Mui had first wanted to play rugby just after those peak bullying years, but another aspect of her condition came into play. “Fun fact,” she begins, “when I was thirteen, I had the bones of a 110-year-old.

“Bone density is part of the condition,” Mui explains. “The skin is the largest organ, and our body uses up so much energy on our skin to make sure it ticks along correctly, that quite often other parts of our body – i.e. bones, internal organs – are neglected. For a lot of people with my skin condition, they do have brittle bone problems. 

“When I was about twelve or thirteen I had my first bone density test, it’s like an x-ray scan of bones, to check your mass, and make sure you’re not crumbling basically, and it turned out my bones were super weak. If I did something like rugby I would be broken easily, but I could still walk, run, do everything, it just meant tackling was a really bad idea.

“The doctor put me on a strict regime of vitamins and medication and, within a year or two I got my bone density back to the level where it should have been, but rugby was still a big risk.” 

Not wanting her to give up on the idea of rugby, Mui’s parents encouraged her to check out her local side: Tigers. “I had a chat with the women’s rugby co-ordinator, she’s really nice. I don’t think she was used to people coming in and saying, ‘can I do anything but play rugby’.”

This led to Mui helping out at games and tournaments, collecting scores, carrying water bottles etc, before eventually taking on the whistle. “I sat my level one [referee course] in 2012 and I was on the field not much longer after that.  

“My first game was at Hong Kong Football Club, a kids’ game, and I had a guy who was watching me and I think, through nobody’s fault, I got really overwhelmed in the first half of that game, and so I ran off at half time crying. The poor guy watching me had to take over in the second half. 

“In my second game, I was given an under-16 game. I went from under-12 to under-16, that is a colossal jump. I effed up so badly, somebody said a lot of coaches complained about me, which is fine.”

Rolling with the punches, the local ref society, which had been under-staffed when she started, began to grow and offer her more help, encouraging her to continue despite a rocky start to rugby officiating. She also progressed to become a match official, lending a hand in an official capacity at the biggest of rugby events, the Hong Kong Sevens. “I continued refereeing,” she says, “I still do. And I get involved in a lot of off-field stuff, stuff like subs bench, recording analysis videos for referees. One of the biggest progressions I’ve made is that I’ve learnt you don’t have to be on the field to be classed as a referee, as long as you’re doing the stuff behind the scenes, you’re still a part of it, that’s been a big thing for me. Obviously, I hope I can still physically ref.” 

Again, there are other considerations. “It would take you about fourteen days to grow even the tiniest fleck of skin, but I would grow that overnight, so it’s a very fast turnover,” she says, “there’s a lot of skin shedding, I’ve got to cream constantly, using this paraffin-based Vaseline, I’ve got to shower a lot, moisturise, and I am prone to open wounds which is a big hassle on a rugby pitch sometimes.”

She checks her arms and hands over, looking for a ‘good’ example. “I was going to show you one on my hand, but it’s healed up,” she says, referencing one of the cracks. “It’s especially bad now the weather is dry, the skin just cracks open, so I have all these little wounds, and you’ve got to be careful not to get them infected. There’ve been times when I’ve stepped on to a rugby pitch covered in so much bandage and wrapping that I looked like I’d been in a war. 

“Another thing that adds an additional layer is that I lack the ability to sweat properly,” she continues. “So to some people, that would be amazing, not to sweat, but it’s horrible. When it’s a really hot day, I have no control, and I’m going to overheat, so I often have to cool down for long periods of time.

“I literally burn up,” she explains, “my mum explains it as like being stuck in a car on a really hot day with the windows rolled up.”

The condition has meant that, at a moment’s notice, her soaring temperature has led to emergency hospital appointments, but it hasn’t stopped her from carrying on in a sport which has given her so much. She’s gone from being a child in the Hong Kong Sevens crowd watching the pre-semi-final march-past to being part of the march-past; she’s made lifelong friends having come from a place where she had none; and she’s found a community that rallies around in times of need. In short, she sums up, rugby has helped her “get through life a bit easier”. 

Her ambitions in rugby involve staying involved with Hong Kong rugby in “whatever capacity” she can for as long as she can, on-field, or off-field. “I’d like to referee for a few more years as long as my body is able to and as long as my bones don’t shatter,” she says, again with a positivity that explains why she has become an inspiration to so many. “I love to be involved so I’ll ref as long as they let me be there.”

She’s become a focal point for many, highlighted by her inclusion in the #Unstoppable campaign. But she doesn’t see herself in that light, even questioning why we want to interview her at all. “I do think with Asia Rugby and all this, ‘why me?’, I’ve got real imposter syndrome,” admits Mui who, incidentally, is also about to start her stage two teacher training qualification. “It’s great to get these things, but I do think there are other people more deserving, so I do sometimes think, ‘why have I got this opportunity? Why hasn’t somebody else?’.”

And for all the positivity in Mui’s life now, there are still moments, in the street, at work, online, that are negative. “It’s a little bit easier to deal with now than when I was a teenager or in my early 20s,” she says of any abuse. “I go to therapy and, let’s be honest, therapy helps, and I’m very lucky to have access to it because it’s so important. 

“I wish more people had access to it,” she continues. “In Hong Kong it’s not readily available to the greater public, which is really sad. I’m very, very lucky, because I don’t know what I’d do if I didn’t have mental health help.”

Which is hardly surprising given she has outlived doctors’ predictions by 25 years already. “Being one of the oldest ones, it comes with a mixed bag of feelings,” she says. “On one hand it’s quite nice to be one of the oldest, the kid who gets to sit at the back of the school bus and watch over everyone else, but on the other hand – and I’ve only really just managed to get over this, technology has its way now, so I don’t know why I’m worrying – but there is mortality.  

“I’ve always been really scared about my own mortality, because while I know everyone leaves their body eventually, there was a time when every birthday I’d write on Facebook ‘thank God I’m here for another year’. 

“Genuinely, given the fact doctors thought I’d be gone by the time I was three, then raised that expectation to five, I just kept thinking I was living on borrowed time. It’s a bit scary to be here at 28 defying doctors. It’s scary but it’s quite nice as well.”

With her condition being so rare, it has also meant other people with harlequin ichthyosis have got in touch.  “There is a bit of pressure as well,” she says, “I feel I’m forced to be a pioneer even though I don’t want to be. A lot of people track me down on social media in person, and one of the phrases I hate, and can’t get my head around, is that they think I’m such an inspiration. 

“Some idiot said I had a ‘God-given talent’, really slushy things like that,” she adds, in her self-deprecating way.  “I don’t go out of the house each day saying ‘I’m going to be an inspiration’. I go out each day and I have the same struggles as most people: I forget my keys, my wallet, my brain sometimes. I’m like everybody else, I live my life the way I can, and if people find that inspirational, me just living my life, then that’s great.” 

Words by: Alex Mead

Pictures by: Ike LI

This extract was taken from issue 13 of Rugby.
To order the print journal, click here.