“Well that was an unusual start to the morning!”

 

“Well that was an unusual start to the morning!” writes a webinar attendee.

At the risk of sounding realistic, most people assume they know our family story just by looking at our faces: “Girl with red skin, they saved her!” as Mui once put it.

Invited to speak at a global International Women’s Day event by global search specialists Taylor Root, Tina, Mui and I took part in our first webinar.

More feedback reads: “You, all three, are heroes… What an inspirational family… Even the Mum’s back story was incredible… Such an inspirational story and some very important points to take away and learn from…”

Tina, Mui and I share our family story in order to raise awareness by involving and hinting at aims for positive change.

Thank you to everyone who made it happen and everyone who made the effort to watch and listen.

Moderator and Lawyer, Sarah Ingwerson, of Taylor Root writes:

Rog, Tina and Mui were the guests for our company’s International Women’s Day 2021 webinar. As a family unit they shared their story of The Girl Behind The Face and highlighted the many issues they have faced; discrimination, prejudice, abuse, unwanted curiosity, hatred, cyberbullying, mental health issues and ultimately survival. They have forged a loving life together – full of love, compassion, humour and support - to overcome all of this. Their story was truly inspirational, uplifting, humorous and honest. The feedback from our global colleagues and clients has been overwhelming and your story has inspired us all. I have no doubt the messages you shared will challenge our behaviours by bringing awareness of the myriad of issues you discussed. You are all very special people and I feel honoured and privileged to have been a part of the discussion.

A big shout-out to tireless HK organiser Gabby Kitney.

Please like and share our Facebook Page if you’d like to help us help others through our family story.

To book a talk, ask a question, or give us your thoughts please connect via our Facebook page or website: https://www.thegirlbehindtheface.com

Thanks, Tina, Mui and me (Rog)

Once upon a time in… Hong Kong

Standing up for Others

(The voice written in below is Tina’s, from a memory she shared)

Ah Chung was a giant yet only five-foot tall in flip flops that were so much too big for his feet.

He wore an old black sweater and old black pants. His face was brown and mottled, the skin stretched taut and thin. His “Fu Manchu moustache” was wispy grey, his hair silvery like a poet’s, and bristly eyebrows shaded eyes sunk deep in leathery sockets.

Sat hunkered on his haunches on the pavement, Ah Chung was a beggar, by which is often meant subhuman and invisible like a ghost. Ah Chung was a man.

On my way to work, I met Ah Chung each morning with a cheery: ‘Jo sun!’ and a smile as I do anyone. He acknowledged me with a crinkled toothless grin. Most days I gave him a soft drink or a sweet bread roll from a local shop; I often gave him money.  When I asked him his name, he said, ‘Ah Chung.’

If Ah Chung wasn’t at his begging pitch, I’d tell a friend at work that I was concerned. She’d laugh and say: ‘Aiyaah! Why always you are talking to beggars. So crazy!

One morning Ah Chung asked my name. I told him: ‘Tina!’ Instead, Ah Chung called me leng loi, meaning pretty girl.

One morning typhoon signal number 3 was raised. Monotonously fell the rain in squally showers. I struggled in the street with my collapsible umbrella which crumpled quickly in the wind and rain.

Ah Chung sat on his haunches beneath a building’s concrete ledge. I waved and when he saw me he beckoned me. His smile came from somewhere deep inside and he unfurled a huge green and black umbrella and pushed it to me in place of mine. I offered money; he refused. Instead, he squinted at the pouring rain then poked his chin at me: ‘Leng loi!’ he said – pretty girl.

My friend called me a crazy gweipo, when I told her I was touched by Ah Chung’s act of kindness; she moaned that I’d get germs from touching something from a beggar, so I teased her.

Ah Chung disappeared not long after.

My friend explained matter-of-factly that he was a sickly old man and probably dead. She said if Ah Chung had been a good man during his lifetime he would come back as a better person in the next. It was her belief and not for me to judge.

Ah Chung had nothing, yet when he saw I was in need, he found something to give. He stood up for me.

We all need to stand up for others, especially so in times of need, like now.

Thanks.

Rog Thomas

For more on why we are sharing our Family Initiative please check out our website: https://www.thegirlbehindtheface.com

Liking our Facebook page would help us tremendously. Numbers grow awareness. They bring greater attention to our core message: “Standing up for Others”

https://www.facebook.com/GirlBehindTheFace

Please leave a comment

“Climb the mountain so you can see the world, not so the world can see you,” David McCullough

Standing up for Others

Arriving in Australia 25 years late, Tina felt like kneeling, like the pope, to kiss the ground; it meant so much to her.

When caught up in the early years of Mui’s catastrophic health scares, when we still dreamed of new beginnings in Australia, before we stood up for Mui and adopted her, Tina wheezed and coughed. She visited a doctor in Sai Kung.

Proudly, Tina showed the doctor a photograph of Mui. The doctor’s stare lingered before finally she looked up. ‘Don’t give this child all of your love, Tina… She’s a heartbreaker… Getting involved with this child will be like a very bad roller coaster ride… Forget about her, Tina, and go and make a baby with Rog…’

25 not entirely uneventful years later, we made it as a family to Australia!

Invited to share our Family Initiative at a conference in Melbourne but without the funds to travel, Cathay Pacific (3 business class return tickets) and SINO group stood up for us.

Of the conference, Melissa Muir, of the U.S. District Court, Seattle, writes: “Amazing Mui and her equally amazing parents Tina and Rog presented a powerful reminder of why we work to stop bullying.”

Of the conference, Dr Lorraine Sheridan, President, Asia Pacific Association ofThreat Assessment Professionals writes: “Mui, Tina and Rog… received a standing ovation and all of our members were deeply moved and inspired. We all need to be reminded of the terrible human cost of bullying.”

The target of a bully suffers greatly; individuals with special needs cease to interest, their differences accepted; the individuals with special needs rarely have the luxury of becoming insensitive because their challenges repeat.

Too often, people believe they know how others should behave in a crisis or how others should respond to trauma; too often parents of children with special needs eat, sleep and live in the moment. As Tina’s mental health and mine has declined from 25 years of crisis management standing up for Mui and each other, a psychologist in Australia has stood up for us with counselling via Skype. She helped arrange two further Family Talks for us in Australia, at a synagogue and at the charity, Courage to Care.

Tina says: “Being of Jewish heritage is a very important part of my identity. The Nazis did more than kill my birth-family, they destroyed my past. People looked the other way. It is so important to stand up for others, and remember.”

Rabbi Shmuel of Elwood Shule writes: “Thank you Tina, Mui and Rog Thomas – The Girl Behind The Face – for your inspiring, moving and empowering presentation. Thank you for sharing your very personal story of courage, resilience and positivity in the face of unspeakable discrimination, hate and rudeness. You are a remarkable family and are literally changing the world for the better.”

Mike Zervos, CEO of Courage to Care writes: “We had the privilege of having Tina, Rog and Mui Thomas share their family story at Courage to Care. The family shared the many stories of the prejudice and discrimination they have endured. Frankly we were shocked at the appalling way some people react and behave.  The audience was enthralled by their positive attitude and their message that each of us can make a difference.

The doctor in Sai Kung was right, it’s been a “roller coaster ride”. She implied that standing up for others was not worth the effort; that we should forget all but self.

Mui’s skin disorder, her autism spectrum, are wrapped up and forgotten in her contagious, winsome smile. She says: ‘I trail walk, I hike, I run, I do yoga, I referee rugby and I fitness box. I love to have fun.’

Is standing up for others worth it?

You need not ask. It is.

It’s why we want a publisher to publish our family book – modelled on and fleshing out our Family Talks – to be able to continue building a platform to be a support to others.

Thanks.

RogThomas

For more on why we are sharing our Family Initiative please check out our website: https://www.thegirlbehindtheface.com

Liking our Facebook page would help us tremendously. Numbers grow awareness. They bring greater attention to our core message: “Standing up for Others” https://www.facebook.com/GirlBehindTheFace

Please leave a comment

Rare Disease Day shock

How did you spend Rare Disease Day?
American Jordan Flake and her son were forcibly removed from a US airplane for having a skin disorder similar to Mui’s.
The impact of a visible difference on individuals and their families is enormous.
As a family we’ve experienced fabulous moments… met wonderful people...
There have been bad times too...
Pointed at, laughed at, stared at, spat at, screamed at...
Daughter unwanted by her local international school, banned from her school bus, banned from areas of her school, banned from the pool of an international hotel, thrown out of a restaurant...
We live in Hong Kong. People are quick to tell us: "People behave far better in the West."
For sure there are cultural differences but there are challenges everywhere.
This year on Rare Disease Day, Jordan Flake was with her son on American Airlines.

Jordan and her son, like Mui, have a type of ichthyosis. 

Here is a link to the Washington Post article:

https://www.washingtonpost.com/…/american-airlines-apolog…/…

Here is a link to a statement the Ichthyosis foundation FIRST made: 

http://www.firstskinfoundation.org/…/first-response-to-amer…

Please "Share" and "Like" to help our story raise awareness amongst the general public and decision-makers. Thanks Tina, Mui & me (Rog)

Please check out our website: https://www.thegirlbehindtheface.com

Our family response to the ignorance and hate.

“She’d be better off dead.” “She should’ve been aborted.” “She’ll have to be sterilized.”

Why do people think Tina and I, or any parent, have ever wanted to be told this?

The Social Welfare Department told Tina and me a doctor had to sign-off on our ability to cope psychologically with Mui’s expected death in infancy before adoption could be considered.

But no one taught us how to cope when Mui survived.

One qualified psychologist had Mui shout: ‘1, 2, 3… be happy.’ Stupid. So Tina and I had to figure out how to support Mui ourselves.

There are no days off. Ignorance is confronted daily. Kids with special needs don’t raise themselves. It takes commitment, resilience and hard work and still does. We’ve chosen to do that with a smile even if a smile is sometimes just the best mask to get you through the day. So even though Mui was abandoned and hidden because of her appearance, she’s grown up smiling too!

But the ignorance continues… and “just ignore it” doesn’t work. You confront it, deal with it and move forward. That’s why we’ve shared our family story.

MUI says:

“I am an avid user of Instagram and I use it to share bits about my life. I don’t feel like I am a spokesperson for Ichthyosis particularly but I also like to try and educate if I can but I don’t force people to think a certain way.

This week, someone posted a comment under a photo of a baby with HI side by side with me (see above). They wrote: “should have aborted that thing Jesus Christ.” I wrote underneath, “thanks for saying that. Makes me feel fantastic about being wanted in the world”.

I have no doubt that if my birth parents found it about my HI early enough, they would have terminated the pregnancy.

I was adopted and I’m glad my parents gave me a chance in life when everyone else walked away.

The fact that Instagram person wrote this comment felt like a slap in the face because I still get affected by comments like this. It’s hurtful. This user doesn’t know me. And I don’t know them.

What she didn’t realise was that her comment kind of hit a chord with me. Words can be incredibly powerful. They stayed with me for much of the day. She will forget about what she wrote. I won’t do so as easily.”

https://www.thegirlbehindtheface.com

Ichthyosis & Halloween…

Once upon a time one Halloween… Tina, Mui and I walked through Kowloon. A woman recoiled on seeing Mui, then laughed... then stared... then screamed and screamed. The woman had mistaken Mui’s face for a mask… then realised it wasn't. 

Mui ran off in streams of tears.

Such screaming happened weekly if not daily on occasion. As parents, we dealt with it each time with Mui at home. Each time we talked it through, came up with answers and solutions, discussed it honestly and openly till Mui was comfortable. 

Mui still has difficulties coming to terms with her skin condition. She’s gone through years of (very loud!) denial of all things Ichthyosis. She isn’t as vigilant with her skin care routine as she should be.

People still send hate: “The b*tch is a f*cking ghoul… face it.”

People still say: “Just ignore it!” though wouldn’t if it were racially motivated hate. 

Too many turn their heads and look away.

In school one of Mui’s friends once piped up: “Mui won’t need a mask for Halloween!”

As parents we asked the teachers to consider a soft discussion of the young girl’s choice of words. We offered to come in to school and present a relaxed talk, though the offer was declined.

These days Mui handles Halloween differently. Her choice.

MUI says: “Everyone goes all out and splashes out on Halloween stuff and costumes. Thankfully I have a cheaper alternative! (Mui's photo pointing to her own face) I am deadly serious. There is an upside to Ichthyosis! This is meant to be a funny post!”

Dealing with Ichthyosis and Halloween remains each individual’s choice.

We’d love to hear your thoughts.

To help our story help other parents and children come to terms with their choices, simply “share” and “like” our Facebook page: https://www.facebook.com/GirlBehindTheFace

For more on our story please visit our new website: https://www.thegirlbehindtheface.com

Thanks. Tina, Mui & me (Rog)

This Blog first appeared on: The Girl Behind The Face

I'm out of hospital after 11 days on IV antibiotics. For a few days Tina was terrified. She was there for me day and night... as she was, aged 26, for Mui during Mui’s early years of endless hospitalisations. Tina is one amazing woman.

Mui’s psychiatrist says Mui processes empathy “differently”. Nevertheless, Mui has many great qualities. And she is never still! 

MUI says: “I took part in a fitness challenge called Project Change 2018 this summer. A 6 week body transformation challenge. For me, it was never about losing or gaining weight. I yo-yoed on the scales. Didn’t care. I won the challenge in a three way tie.

Every contestant was told to pick a charity. 

Once, I didn’t want anything to do with Ichthyosis. But because of our platform, The Girl Behind The Face, I was able to confront the fact that I have HI. I have been taught by my parents to give everything a go. I wanted to show people that no matter your limitations, don’t let that stop you from doing your thing.”

TINA says: As The Girl Behind The Face, the three of us have raised HK$36,515 for Ichthyosis related causes. Mui’s Project Change win means US$243 for the Foundation for Ichthyosis & Related Skin Types.

Here’s a video of Mui’s Project Challenge:

https://www.facebook.com/716884821996742/videos/2101576209861741/

To help our story help other parents and children simply “share” and “like” our Facebook page.

For more on our story and future charity challenges, please visit our new website: https://www.thegirlbehindtheface.com  

Thanks Rog

Sir David Tang & the “monster” on the bus.

Uncle David, Mui’s de facto godfather, died this week. He’d been fighting cancer.

In the forward to our book The Girl Behind The Face, David writes of us as a family: “I am an admiring friend.”

Well, we’ve admired David since the very first day we met him; the day he changed one vile act of discrimination, into something very, very good. The day he changed our lives.

When Mui began at international school, she had to go by bus. Tina booked a seat for the coming term. The first evening, Tina received a phone call from a woman from the bus company.

‘I saw your daughter, today,’ the woman spat down the phone, ‘your daughter looks like a monster… She’ll scare all children… She will never go to school on my bus…’

No one offered help; people looked the other way. Unstable health meant Mui’s life hung in the balance then and Tina and I were coping together alone; no time to fight vile discrimination.

Mui was banned from the school bus and there was nothing we could do. It was a devastating moment. We shielded her from the truth and moved on.

Three years later, Tina received a phone call from a man we’d never met. An eloquent English voice asked: ‘Is that Tina?’

Tina answered, ‘Yes.’

‘I’m David Tang. I’ve heard about you and your family. I’d like to meet you, Roger and Mui. Can you come to the China Club on Wednesday?’

On Wednesday we made our way to David’s private club.

David’s humour was immediate, outrageous and fun and he had Mui in a fit of giggles and Tina and me laughing out loud from the off. And he wasted nobody’s time:

‘What’s this about a school bus…? Right, let me sort something out… How about a taxi back and forth to school…? You find a driver… I’ll pay…’

The following Monday, taxi driver, Mr Lee, became Mui’s twice-daily chauffeur.

One reader of our book wrote after reading the chapter in full: “Sickening to read these hurtful, ignorant comments but how good was D. Tang! Fantastic.”

And that same evening David did a second fantastic thing for us. Trips, parties, lunches, dinners, a medical conference in Seattle and so much more... down the years, David and Lucy, his wife, have done so many huge and big and small “fantastic” things for us.

On Mui’s 21^st birthday, a day doctors said she’d never see and we would never celebrate, we celebrated together with David and Lucy, on Sir David’s boat. It created another magical memory on such a special family day. Later in the afternoon as Mui opened presents and David told funny and mischievous stories, we sailed past the hospital on Hong Kong Island where Rog and I first met Mui and where we’d celebrated Mui’s second birthday – our first together. The distance travelled between both birthdays was lost on neither Tina nor me.

David has been a larger than life figure in a great many people’s lives and it has been a privilege to be called a friend by him and to call him our friend, too. So please keep Lucy (Lady Tang) in your thoughts and prayers, right now.

So many happy, funny and fun afternoons and evenings. We shall miss David greatly.

Thank you, David.

Rog, Tina & Mui Thomas (The Girl Behind The Face)

By Rog Thomas

Please help us continue to challenge attitudes and fight discrimination:

Our website: http://www.thegirlbehindtheface.com/media.html

Our Facebook page: https://www.facebook.com/GirlBehindTheFace

Please leave a comment.

We saw this happen, but couldn’t believe our eyes

20 years ago today, Mui stole the show:

Adapted from: The Girl Behind The Face.

It’s June 30^th 1997. The eyes of the world are on Hong Kong. It is a sultry night. 156 years of British rule are ending. The territory is being handed back to China. The “Great Chinese Takeaway” Prince Charles calls it in his diaries.

At a few minutes to midnight, Tina and I sit glued to our TV.

Mui has a fever. She sleeps fitfully in her room a few metres away.

CBS news anchor Dan Rather, who Mui likes to watch and calls Uncle Dan, is dressed in khaki fatigues ready for four thousand Chinese soldiers to arrive on Hong Kong soil.

I fill our glasses with champagne.

Prince Charles represents the Queen. He begins to deliver his farewell speech. In minutes Hong Kong will once again belong to China.

The door of Mui’s bedroom opens. She stands bolt upright in the doorway. Eyes stretched wide-open, she looks ahead with the opacity of a blind man’s stare. ‘She’s still asleep,’ Tina whispers. Tina and I remain stock-still. Mui often sleepwalks. We guess it’s best not to wake her.

Bloody from scratching, Mui walks round the settee and squeezes into her favourite spot: in-between Tina and me. She stares vacantly at the television. Tina looks at me, I look at her, we both look down at Mui. We stifle giggles and sniggers. We’re missing Prince Charles’s farewell speech. But we can’t take our eyes off Mui. ‘Should we wake her?’ I whisper. Tina shakes her head.

It’s midnight. The rigmarole is done. The Union Jack is lowered, the communist flag is raised, the PLA rumble into Hong Kong in their thousands.

Mui stands up and sleepwalks back to bed. Only now, of course, her bed’s in China!

With champagne, we toast our daughter and Hong Kong.

Thanks Rog

"You are an example to us who are starting this difficult path."

After posting on Facebook about our most recent Family Talk, at J.P. Morgan bank, Deisy, a woman in Peru, shared our page. I thanked her. She replied: "You are an example to us who are starting this difficult path."

Deisy is the young mother of a baby born with Harlequin Ichthyosis.

When our Family Talk was over at J.P. Morgan, Ryan, the Managing Director who invited us to share, said: ‘I shall hug my daughters extra tight tonight.’

And then Ryan made a charitable donation of twenty thousand Hong Kong dollars (HK$20,000) for us to forward to our Ichthyosis charity of choice: F.I.R.S.T. He arranged the J.P. Morgan “testimonial” for our new website, too:

Mui, Tina and Rog,
We had approximately 110 people in the auditorium and joining via telepresence for your Family Talk. Many of those colleagues have reached out to me to express their thanks and say how they had been touched by your family’s story – and the way you tell it. You have faced many painful challenges as a family and your courage to speak of those challenges gave us all tremendous respect for your family’s journey and gratitude for sharing it with us. Thank you for such a moving and thought provoking session. We look forward to staying in touch with the wonderful Thomas Family.
Ryan

This is our motivation to invest our lives into what we are doing. It’s not easy. Of course it’s not. Deisy understands that. It’s why she wrote. Ryan understands that. It’s why he donated.

During our Family Talk at J.P. Morgan, while sharing memories of life changing moments from her childhood and youth, Tina felt her throat tighten and her heart begin to race. She quickly became overwhelmed by a deep, deep sadness. But she sucked it up and smiled and carried on. ‘I battle my memories with smiles and laughter,’ she says.

Once, at the end of one of our Family Talks, Mui burst into tears when details were revealed about bullying that had taken place in school behind her back. She too has chosen to continue. ‘I'm feeling more and more comfortable now, talking about past experiences,’ she says.

Tina and I admitting we’ve both been diagnosed with PTSD; Mui admitting “attending sessions with a specialist... I have a lot of deeply rooted issues.” in our blog isn’t easy, either. Reactions like those of Deisy and Ryan make it worthwhile.

We met Mui 20 years ago as an act of random kindness to a stranger who wanted to be loved. With so many act of random terror happening around the world, Tina, for her birthday this week asks: ‘Please do one act of random kindness for a stranger.’ It need not be big. A simple smile will do. Who knows, it may even lead to something great. A simple smile and wave was how I came to marry Tina. How great was that!

To help us challenge attitudes to visible differences, cyberbullying and commitment simply “Like” our Facebook page at the top: https://www.facebook.com/GirlBehindTheFace

Thanks

Rog

300... students / “I saw some of the teachers cry today,” the young girl said.

At the conclusion of our Family Talk, at Yew Cheung International School opposite Australian International School, after Q & A, I invited the students and the teachers to come forward and say hi! or give a hug or take a selfie… and with a cheerful roar, three hundred students swamped Mui in a scrum of smiles and laughter!

One smiling teacher shared with me: ‘The kids don’t normally do this!’

Another, to another teacher exclaimed: ‘I told you it would be like this… I told you, didn’t I!’ and her colleague agreed, ‘You did!’

One girl, no more than 14 years of age, approached Tina on her way to Mui, and with a smile she said, ‘I saw some of the teachers cry today!’

And Mui? She barely spoke. Instead, she grinned and posed for selfies and was hugged, and hugged others back and was group hugged and autographed the arms of students.

Giving school and corporate talks – our Family Talks – remains something very new for all three of us. We’re not old hands.  We’re not tired, professional motivational speakers. We’re just a mother and a father and a daughter.

It comes constantly as a surprise to us that our story generates such emotions as tears. We really wonder why. Perhaps because as most parents of a child with special needs say, we say: it’s simply normal life. And Mui? She knows nothing else. Life is life, we enjoy it. We do not see it as a big task. We see our daughter’s potential; we want her to be independent.

Mui says: ‘I don’t see myself as being different. I’ve never wanted to admit I have special needs. I just want to get on and do my thing. I’m thankful my parents have enabled me to live a pretty normal life.’

Nevertheless we do know that most parents of children with special needs are all too often given short shrift. Their stories are under-reported. It’s why perhaps so many such marriages end in divorce. The frequently-quoted statistic is of a majority divorce rate in marriages where the parents are raising a child with special needs. It’s a startling statistic. Perhaps it shows how much more attention should be paid to the lives of such people?

Thank you too to all those who responded warmly to my previous blog: The elephant in the room / the insult in the street. It was a big decision for Tina and me to reveal that such things as being insulted in the street still happen to us; and to reveal, too, that we both have been diagnosed with PTSD, and that we have a normal family story not a “Disney-ending” one. Thank you for your kind support.

Sharing our story as The Girl Behind The Face is a platform to empower others. We are grateful for all the support and opportunities we receive.

Please “Like” our Facebook page The Girl Behind The Face to help us to continue challenging attitudes.

For more on our school & corporate Family Talks, or to book one, please see our website for details.

The elephant in the room / The insult in the street

It came as quite a shock to Tina and me to be insulted, denounced and verbally abused by a woman in the street last weekend. It was insulting to have our love for our daughter questioned. And insulting to be told that we did not understand our daughter. This sort of abuse hasn’t happened to Tina and me for quite some time.

It’s funny how many people tell us: ‘I don’t know how you and Tina cope. I couldn’t!’ with regard to raising and loving Mui.’ Well it’s not that funny, I suppose, because Tina and I were diagnosed with Post-Traumatic Stress Disorder towards the end of last year as a result of coping with our daughter’s psychological challenges. Such is life. We are not complaining and nor is such a diagnosis an excuse for us to stop laughing. We just shut down our emotions. Bottle them up.

From the life changing challenges of her past that inspired her to help others, Tina’s dictum is the Robin Williams quote: “I think the saddest people always try their hardest to make people happy because they know what it’s like to feel absolutely worthless and they don’t want anybody else to feel like that.” Mine comes from Bill Parcells: “Blame no one, expect nothing, do something (positive).”

Stress, depression, breakdowns, post-traumatic stress etc tend to be the “elephant in the room” when it comes to coping with a son or daughter with special needs. Because support and understanding for the chaos of psychological challenges still comes a poor second to having a visible difference or raising and supporting someone who has. We know both sides of the coin. More than one friend has severed ties with us when discovering the psychological challenges faced by our daughter. No doubt more will follow. We accept this and as a result tend to keep such stigmatized pressures to ourselves.

But what we don’t accept is being insulted, denounced and verbally abused in the street and having the sincerity of our love for our daughter challenged, or having the challenges our daughter faces belittled. It is shocking ignorance.

In response to the woman insulting Tina and me, Mui says:

“Yes, I have battled with my parents about going, but I have been attending sessions with a specialist and we are working through a lot of issues. I may come across as fine and chirpy but I do have psychological struggles. I have a lot of deeply rooted issues. Ones that I don’t have any desire to inform the whole world about. I would only mention the struggles in our book and not discuss them on other platforms because I would feel even more uncomfortable than I already do because it’s such a personal topic. My parents and I are making mental health decisions that work for us as a family. Please respect my family and our choices.”

Of the woman Mui adds: “She has repeatedly screamed at me that I just need to follow her advice.”

As a family we owe a tremendous debt of gratitude to Dr Lauren Bramley as well as to Sir David and Lady Tang.

Nevertheless, we do not expect support so why share all of this? Because as a result of our Family Talks and our Facebook page: The Girl Behind The Face, we have come to appreciate how sharing our story might be of help to others.

Please "Like" our our Facebook page: The Girl Behind The Face

Thank you.

Please tell us what you think!

On Facebook, a friend of Mui’s wrote of her:

‘I happen to know this loud mouthed, persistent little monkey for the last 12 years (God really?!?) Do not be fooled – her unedited-not-for-the-shops life story is chock full of alcohol induced activities, (much like all of us really!), rugby stories, anger management failures, plots to kill mini bus drivers and name dropping of almost every celebrity known to hit HK. I’m pretty sure none of that is in this book that her lovely parents have written… But you might have to buy it to find out and if not – go and have a pint with Mui Thomas down the pub (your round btw).’

***

The line: I’m pretty sure none of that is in this book that her lovely parents have written begs the question: ‘What is in our book and why should people read it?’

Our book is a bare-knuckle account of how and why one woman (Tina), the birth-granddaughter of an Auschwitz survivor, overcame the traumas of her childhood and, quite by chance, came to fight for and adopt and raise an abandoned child with a deforming skin disorder in Hong Kong. And what that child – just a baby – overcame to stay alive and the challenges day-to-day from then on up to the present day.

This book does not sugarcoat the reality of raising an abandoned daughter with special needs, does not build false images and confronts the issues head-on. Like so many other families who nobody knows anything about, we are ordinary people dealing with an extraordinary situation. The “voice” of the book is Tina’s though it’s written by me. Mui has contributed her own words, too.

In the words of some of the people who have read it:

·         “This book unfolds a dramatic real life story between a young woman’s traumatic life (Tina’s) and how it impacted her and a child’s life (Mui)…”

·         “… the narrative of Mui’s life is interwoven with Tina’s story…”

·         “The action is solid, the dialogue flows, and the whole thing is smoothly paced. Love the touches of philosophy…”

·         “I experienced and absolute rollercoaster of emotions…”

·         “… once in a while a story comes along which makes you sit up and take note and makes you want to get your act together…”

·         “This is a must read for anyone that admires the enduring human spirit and how it it triumphs against all odds…”

Our daughter is an inspirational young woman not because she has a skin disorder – she has always been told her skin does not define her – but because with support, she’s willing to confront and overcome challenges that might break many of us. It's why, as a family, we give school and motivational talks together.

We are grateful to the Duchess of York who introduced us to her literary agent, and grateful too to Mui’s de facto godfather, Sir David Tang, for introducing us to the Duchess of York.

We are a family getting by in a little village in the eastern New Territories of Hong Kong. We never thought our story would interest anyone beyond friends and family.

Please tell us what you think.

 

More about our book: http://thegirlbehindtheface.weebly.com/our-book.html

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Our website: http://thegirlbehindtheface.weebly.com

Our blog: http://rogthomasblog63.blogspot.hk/

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