An Unexpected Adoption: Tina, Rog and Mui Thomas

An Unexpected Adoption, a memoir by Tina and Rog Thomas, with contributions from Mui Thomas, delivers a powerful, inspiring and unforgettable account of a woman’s fierce resolve to fight for a child, and a family’s unwavering commitment to each other. This is a mother’s tale and a moving love story of two people who become parents to a child seemingly destined for them.

When Mui was born in Hong Kong, doctors believed her rare skin condition would be fatal. She was a child “rejected, broken and let down by society.” Tina and Rog Thomas planned to volunteer only on weekends to care for an abandoned baby girl with special needs they met in a hospital ward, but life had other plans. “My parents only wanted to be weekend volunteers. But as it turns out, I wasn’t their volunteer child; I was their forever child. Some stories are meant to be”, Mui says.

At 33, Mui Thomas is known to be the fourth-longest-surviving person with Harlequin Ichthyosis, a rare and life-threatening genetic disorder, with only around 200 known cases since its discovery. The condition leaves her skin raw, thick and scale-like. She cannot sweat; her skin is highly prone to infection and grows rapidly, creating painful fissures. This condition has required relentless care and still demands rigorous, time-intensive daily management. Mui, though, isn’t defined by her skin condition. She’s a yoga instructor, has refereed U12 Rugby teams, is a caregiver, and a motivational speaker. She has also run the Standard Chartered Half Marathon and completed the Hyrox fitness race, but she does not “actively live to inspire” and is simply navigating life like anyone else. “Beneath my red skin and smile is just another person, just trying to make it in this crazy world. Whenever I’ve been unsure of doing something, my parents have always encouraged me to give it a go,” Mui shares.

This memoir’s strength lies in its unflinching honesty as the family share their journey without embellishment, letting the raw truth of their experiences speak for itself. Readers witness Tina’s traumatic childhood, Mui’s adoption and the unfolding of Mui’s formative years. It confronts the realities of raising a child with special needs, the ramifications of cyberbullying, and the complexities of mental health. As Tina puts it, theirs is a story about “action, pragmatism, and commitment over shallow promises and empty words.” It is, at its heart, “a mother’s story: one woman’s unlikely personal journey to escape the crushing trauma of her past, and in the process help an abandoned child escape hers.”

Tina, Rog and Mui, I would love to start with your memoir. What was the writing journey like for you? Are there any moments from that time that stand out for you?

Tina and Rog: As mentioned in the book, “Sharing our story is our response to the cyberbullies who taunted our then teenage daughter to kill herself”, and “It is shocking to realise that within your own four walls you cannot know your child is safe.” We were banned from sharing our story when Mui was a child. She is now an adult and gung-ho to share. Our sponsored speaking tour to Australia completed the narrative arc.

I’m the voice, Rog is the words. Rog wrote the book in my voice. How? His literary talent combined with the intimate depth of our relationship. We are a team of one, fired-up by a lifelong commitment to be of help to others. Mui’s words are her own. The comments were put together by Rog from information he’d accumulated, as well as from responses Mui gave when requested. We read the manuscript aloud together several times for accuracy and context. Reading the manuscript aloud with us, confronting/remembering moments from her past, Mui shed tears.

Mui: Remembering some of the harder moments was definitely not easy and has brought me to tears a few times, but I think it’s brought us closer than we already are!

Your family has bravely shared your experiences with abuse, discrimination, cyberbullying and prejudice. The memoir also shines a light on the indifference and bias within many parts of society and its systems. What changes would you most like to see in hospitals, care centres, schools and beyond for children with disabilities?

Tina: I have shared the trauma of my past, the abandonment, domestic violence, mental health abuse, adoption issues and suicide, and the experiences Rog and I have gone through volunteering with and then raising a child with special needs, a visible difference, attachment disorders, ADD and Mui’s being on the autism spectrum, for it to be of help to others.

Overall, carers and parents of children with special needs need to be involved in the decision-making process rather than be dismissed as one dimensional figures existing solely to fight for their child. Their experiences should be a source of knowledge to benefit healthcare providers and the medical community.

Mui: While there has been work done and more acceptance over the past few years, I think it would be great if those in higher powers were to actually listen to those with lived experiences. Because we are the ones who have gone through those experiences, and not all doctors or teachers have. Ideally, there would also be more inclusion and acceptance in public places. I am well aware of the privilege that I have. I have the confidence and the networks to be able to function fairly well and seamlessly. I have people fighting my corner in all ways. But I’m also well aware that not everyone has that same kind of support that I have had. There are people with disabilities and challenges who have not had my level of care and understanding. So if that could be improved upon. That would be fantastic.

Tina and Rog, your stories show that extraordinary things can happen when people stand up for one another. If you could go back in time, is there anything you would say to your younger selves about this journey?

Tina: I view every part of my life as a building block. My focus is on the present and future. What I’ve learned in my childhood, teenage years and beyond allowed me to tackle the brutal challenges I faced raising Mui, as the challenges Rog faced helped him.

Mui, you’ve shared that you don’t want to always be seen as an “inspirational story.” Living with Harlequin Ichthyosis, you’ve run the Standard Chartered Half Marathon, completed the Hyrox fitness race, and become a yoga teacher, caregiver and rugby referee. While your achievements inspire many, can you talk about the challenges of being constantly viewed through that lens?

I think that while it is definitely a feat to do such things for anyone, I have always done these things simply because I want to give things a go, and I have been encouraged to. The fact that I have a skin disorder and somehow people think that’s even more motivational is baffling to me. Because that’s almost like saying, oh I can’t run, oh but Mui is running. If Mui can run, so can I. And I find that kind of awkward and uncomfortable because why should I be responsible for getting others out there and off their backsides? I have to put in the work in whatever I do, whether it’s running, Hyrox, yoga or my daily job. I fully expect to be told if I’m not doing a good job. The fact that I “motivate” is great. But put in the hard work as well.

All three of you have described humour as a lifeline in tough times. I would love for you to talk more about this.

Tina: Throughout my life, humour has helped me cope with the trauma I’ve been forced to face. Hence, the Emily Dickens quote at the front of the book: “Mirth is the mail of anguish”.

Mui: I probably have a little bit of that humour as well. I have a tendency to be a little awkward and use offbeat humour as well sometimes. It’s not always well received, though!

If you had to narrow down on one thing you want readers to take away from your story, what would it be?

Tina: The through line of what Rog and I have done is: StandUp4Others, Actions not Words.
An action can be as simple as a smile in the context of solidarity.

Mui: It’s not always easy living my life. But with the right support and encouragement, it’s a bit easier!

What’s on each of your bucket lists now?

Tina and Rog: Global Speaking Goal: Reach 100 talks – we have currently given 80 talks, both locally and internationally, to corporates, NGOs and schools. Our goal is to speak in major cities worldwide to share our core message of “StandUp4Others, Actions not Words”.

Finish and publish the reinterpretation of our story for Young Readers, as well as a series of illustrated children’s books about purpose and self-acceptance under the “Girl Behind The Face” umbrella.

Mui: I’d like to travel the world more and possibly do a bungee jump. I want to run a full marathon, as well.

We would love to know more about your series of illustrated children’s books and anything else you’re working on currently.

Tina: My illustrated children’s books will be for early readers (4-9) – illustrated stories rooted in my childhood fantasies and adventures deep in the family forests in Germany, and in my dreams, with my grandfather. The Illustrations will be in the style of my Christmas cards, one of which won a 2018 US Christmas card competition and was subsequently mailed to 6,300 households. My Christmas cards collections will again be available for sale from November this year. 

Rog: My next book will be for readers aged 10+. The style will focus on an age group I have spent years teaching, and all the while connecting tantalising snippets of classic literature to young readers from the get-go. The humour, narrator and content have met with universal approval to date from young readers.