The Girl Behind the Face aims to stand up for others and challenge people’s assumptions.
The world’s first rugby referee and yoga teacher with harlequin ichthyosis. Survivor. The “poster girl for what happens when strangers stand up for someone else.” These are just a few descriptors for Mui Thomas, part of The Girl Behind the Face Initiative, which was started by Mui’s parents, Tina and Rog Thomas, back in 2015.
Wearing a floral shawl over a black Lululemon top, Mui, with a cheery disposition, sat with TMS alongside her parents to talk about her life, her parents and the Girl Behind the Face initiative, which is all about “finding purpose in adversity.” Having a visible difference that sets you apart from others can’t be easy. But through The Girl Behind the Face, this family is fighting to change people’s perceptions and push them to see beyond the surface.
“It’s all about challenging perceptions and standing up for others,” said Tina. By emphasizing a hands-on, person-to-person contribution, they’ve reached out far and wide to remind others that they’re not alone.
Adversity and purpose
Rog and Tina hadn’t initially planned on having a family. In fact, they weren’t even planning on staying in Hong Kong. The family portrait they’d pictured back then was framed in Australia. Adopting a child, let alone one with special needs, wasn’t on the radar. “We were just going to have a birth family and live happily ever after on a beach in Australia. So I can blame these two that I’m not suntanned and bronzed,” jokes Rog. But all that changed when they met Mui as a toddler.Mui was born with harlequin ichthyosis, a rare genetic disorder that affects the skin. Tina and Rog met Mui as short-term weekend volunteers, but Mui’s extreme Attachment Disorder saw them continue volunteering for two years. They adopted Mui after her life took a devastating turn. When they adopted her, they were also told that Mui wouldn’t survive long. Harlequin ichthyosis has a mortality rate of 50% worldwide, with most people who have it dying in infancy or early childhood. “The reality is that up until the age of 10, we didn’t believe that Mui would survive. So we always had that hanging over us,” says Tina. In fact, Mui is part of only the first generation of survivors of the condition.
But ignorance is bliss, as they say. “One of the ironic realities is that ignorance is a powerful tool,” says Rog. As for raising their daughter, they took it day by day. All they could do was cope. There was no other alternative, according to Rog. “We just raised Mui using hope, common sense, logic and trial and error.” Mui was never treated differently by her parents. “The idea was that we gave Mui an ordinary childhood because we saw her as a child.”
Throughout her life, Mui has faced challenges associated with her condition. But whether it affected her health, speaking or movements, Mui’s “demanding” personality, as noted by her father, has always pushed her through. “She found a solution. You’re faced with a challenge, and it strengthens you by just finding that solution,” says Rog.
“What we’ve tried to instill in her is the fact that you can’t talk about it; you’ve actually got to do it.” Simply screaming and shouting will get you nowhere. Complaining and condemning won’t get results.
That mindset inspires the mission of The Girl Behind the Face, which aims to stand up for others and challenge people’s assumptions. Not only do they educate people about the challenges they and Mui have faced in life, but they also aim to create change. They do this on a wider scale through talks booked by groups like corporates, schools and NGOs. They’ve also got a book, “An Unexpected Adoption: Finding Purpose in Adversity,” which they intend to publish in the new year.
“We don’t tell people what to think, we show them how to think,” says Rog. He emphasizes the importance of seeing beyond the visible difference. “You respect the challenge when you see somebody, then you see the individual, you see the person themselves.” He adds, “Most people tend to see our daughter as just a visible difference.”
Nothing is perfect, and success may not always be consistent. It’s a given that everything we work for comes with challenges. To Mui, success is achieved through trial and error. “I’m always trial and error. My life is a work in progress,” she says with a smile.
Going beyond skin-deep
The name of the Girl Behind the Face actually comes from the adverse childhood experiences faced by Tina and then also Mui, he shares. The initiative itself all began with a focus on the impact of cyberbullying and the mental health challenges faced by Mui and by Tina and Rog. But when people hear the “Girl Behind the Face,” they instantly think of Mui. But it could be anyone. “What it means is that behind an individual’s face is the real person, anybody,” clarifies Rog.
Tina’s own story is that she’s only here in the world because her biological grandmother survived the Auschwitz concentration camp run by the Nazis. Mui had a traumatic start in life as a ward of the Hong Kong government. Her biological parents, who had already lost a child before to harlequin ichthyosis, abandoned her at birth.
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Written and put together by Christine Dulion, Elize Lanorias and Krystal Lai.
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