Cover Mui Thomas (Photo: Affa Chan/Tatler Hong Kong)

Mui Thomas is one of 20 known people worldwide with the same extremely rare skin condition. She discusses the challenges she has encountered and shares an excerpt from her parents’ forthcoming book, An Unexpected Adoption: The Girl Behind The Face

Having grown up with a visible difference she didn’t ask for, Mui Thomas could have shunned the spotlight, but instead chose to face it head on and use people’s attention as way to educate others about her extremely rare skin condition, opening frank discussions around mental health and the ups and downs in the life of someone born different.

At 29, Mui is one of 20 known people worldwide diagnosed with harlequin ichthyosis, a congenital skin condition which affects an estimated one in every 300,000 births. She is at risk from brittle bones and sun exposure, yet after discovering at school that sport gave her an opportunity “to fit in”, she became the first person with the disorder to qualify as a rugby referee and is a regular fixture on Hong Kong’s pitches.

Abandoned by her birth parents, Mui was adopted by Rog and Tina Thomas as a three-year-old, despite doctors telling them she wouldn’t survive beyond infancy. Babies born with this condition are typically covered with thick segments of skin that splits and cracks. As well as causing skin to grow much faster than normal, the condition severely impacts internal organs and breathing. Nevertheless, Mui is now the fourth oldest known person living with the affliction, and is not only using her voice to educate others but also channelling a fighter’s spirit towards bringing her ambitions to life, despite a lifetime of stares, unpleasant comments and cyberbullying.

Thanks to a stable and supportive upbringing, Mui has gained confidence and resilience. “My parents never raised me to believe that I was any different to kids my age. They made sure I had an amazing childhood. If I was ever upset about something, my dad and I would lie on my bedroom floor and talk it out,” she says. Though, she adds, dealing with negative attitudes never stops being a struggle.

“Growing up, there was a fair amount of ignorance from both children and adults [regarding my condition]. That is something that will affect me for the rest of my life. It absolutely sucks but as I’ve gotten older, I realise that if I react to others in anger, it doesn’t help the situation.” Sport has given her a purpose and an outlet to direct her energy into. Mui devotes most of her time to rugby, which she began playing at school. Today, she is a referee for the Hong Kong Rugby Union. “Sport has helped me stay healthy and fit. There is an assumption that exercise is a no-go [for me] because of things like overheating and brittle bones, but [the rugby community] has made me feel accepted and has been amazing at accommodating my needs,” she says.

Though Mui has a busy and active lifestyle, she needs to be more careful than her peers, as activities like swimming in the sea or too much sun can aggravate her skin. So she found solace in yoga. In 2018, she posted on social media that she was looking for work, and yoga teacher Hersha Chellaram, the founder of the Hersha Yoga School of Teacher Training and the Yama Foundation, offered her a full scholarship to her basic teacher training. “I didn’t think yoga was for me. It’s the polar opposite of rugby,” Mui says, laughing. But last year, she completed her intermediate teacher training and is grateful to Chellaram for giving her a window into an activity she may not have tried otherwise.

“Mui is a firecracker,” Chellaram says. “She’s so lively, and facetious at times. She’s a kind, gentle soul who is loyal and committed to the people and the causes she cares about. She has a very strong personality and doesn’t take her yoga so seriously, which is a breath of fresh air.”

Despite continual knocks to her confidence, Mui is a charismatic personality, both on the pitch and on social media. Her Instagram account, which has 11,000 followers, offers vignettes of her life—without any sugarcoating. This forthcoming nature was instilled in her by her British father and German mother, who have dedicated their lives to giving a voice to marginalised communities.

In 2015, Rog and Tina created a Facebook page to share their experience and help parents raising children with similar conditions. Following that, they created their website, The Girl Behind the Face, which they call a “global family initiative for inclusion and diversity”, advocating for victims of abandonment, domestic violence, mental health issues, visible differences and cyberbullying, with Mui as the self-described “poster girl” for the initiative. The family use “StandUp4Others” to promote their mission online, and invite others to join them in doing so.

Mui’s story has appeared across media worldwide and has garnered attention from public figures, including Frederick Ma, David Tang, Kate Moss, Richard Branson and Jackie Chan. This year, Tina and Rog plan to release their book, An Unexpected Adoption: The Girl Behind The Face, written in 2020 and featuring contributions from Mui. The family is currently seeking the right publisher for their book, which they hope will shine a light on their journey so far. “Just because other people tell you that you can’t do something, you can’t let that stop you from following your dreams. Having a visible difference can suck, but surrounding yourself with positive people makes all the difference,” Mui says.

The family share an excerpt from their upcoming new book, An Unexpected Adoption: The Girl Behind The Face

Prologue (in the words of Tina Thomas)

“I don’t have an ordinary family. Yes, we laugh and smile and joke together, but people don’t react each time they see ordinary families. In Seattle, a father saw us and said, “God bless you and God bless your beautiful family.” In Cologne, a mother saw my daughter and said, “Something like that should be gassed.”

Either way, it’s impossible for Mui to go out, or to go out with Mui, without attracting attention. The privilege of anonymity does not exist for her. As a baby, Mui became restless when people stared. As a child, she raised her fists. Once, she said, “Mummy, if there’s one thing I want for Christmas, it’s to have ordinary skin.”

People ask: “Why did you adopt her?” by which they mean, why take in a child with an unusual appearance who has been rejected, broken and let down by society? Or they say, “I couldn’t do what you guys have done.” Though in truth, we felt we had no choice.

I’m an ordinary woman, but I’m not a regular parent. Adopt and raise an abandoned child with a rare, life-threatening skin disease and you become your child’s round-the-clock nurse and medical expert, cheerleader, advocate and friend. It is a huge challenge, but then, life just is sometimes. My family was exterminated in the Holocaust. Standing up for Mui has meant facing inconvenient truths.

Too often, people believe they know how others should behave in a crisis. Raise a child with special needs and it is comedy with pathos; you’ll find yourself laughing at the most inappropriate moments. So often, Mui’s laughter and smile have hypnotised; so often, we have been astonished by the hearts of strangers and the people who have stood up for us.

Whether during good times or bad, we have found things to celebrate: Mui singing solo on a nightclub stage at 12 years of age; Mui running onto a sports field to become the world’s first rugby referee with harlequin ichthyosis, as well as becoming a yoga instructor; supermodel Kate Moss and British prime minister Tony Blair inviting us to their hotel suites. None of which means we have stopped being ordinary people.

We were told our daughter would die in infancy. We were told she would never smile. Well, Mui is an adult now, and seared into my heart is the bright, contagious smile that lights up my daughter’s face. This is our story.”

Learn more about Mui and her family here: website , LinkedIn, Facebook.

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