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