You always judge a man by how he deals with adversity’ is a not uncommon quote.
Women though, in my experience, tend just to get on with life.
When my favourite aunt needed to get from her village to another in the 1920’s but found no means of transport, she bought a small motorcycle on the spot and rode there. She stood up to my grandfather, too, whenever he put a member of the family down. When her fiancée was killed in World War One she never married. She just got on with life.
When my grandfather denounced my mother and my father on the doorstep of his apartment in front of my mother and my brother and me, my mother wiped away her tears, came home and made dinner. She just got on with life.
The first time Mui was rushed into the hospital emergency department with a severe chest infection when we were her volunteers, a nurse told us we were not allowed to be with Mui because we were not family. Tina stood her ground for over forty minutes and refused to leave the hospital. Finally the hospital staff relented and allowed Tina onto the ward. Mui was withdrawn and small on her bed, and suffering. The moment she saw Tina, her face exploded with delight. Each time after that when Mui was rushed into hospital, Tina, for two years as a volunteer and from then on as a mother, slept on the floor beneath Mui’s bed so as to be there for her. No beds were provided, no mats were allowed. After months of hospitalizations, I convinced Tina to come home for a few hours each night to sleep before returning each following morning before dawn to be at Mui’s side when she awoke.
Johnny Depp is the parent of a child who was once seriously ill. He frequently visits sick children in hospitals. The actor says: “The kids, bless them, they are so strong… they are so courageous. But the parents are the ones who are slowly dying.”
As a father, I would never belittle the role men play in their children’s lives or in the lives of those they help as volunteers. Men do get judged on how they deal with adversity.
And women? There have been days and weeks and months of adversity as Tina and I’ve raised Mui. There still are. Yet Tina has never complained about her own needs or on what she has missed out on. She has never expected help or support. She just gets on with life, as strong women do.
She’s made me a better person. She is my inspiration.
And now there is my daughter.
If you want to join us in building a platform to raise awareness of visible differences, cyberbullying and commitment you can do so by clicking “Like” at the top of our Facebook page The Girl Behind The Face and by sharing it with your friends.

When hope is done there’s always action. When action is done there’s always help. When help is done there’s always love. And come what may there’s always Mum.

How odd to watch a TV medical drama and to, in seconds, relive a moment when a preteen daughter’s body dangles grey and limp and lifeless from her mother’s arms. A moment when all hope’s extinguished – just when hope is needed most – and as her parents we both think this time our daughter’s gone.

Yet still the mad dash to find the ambulance that’s got lost; the mother’s calm refrain: ‘Please God, don’t let Mui die’; the mad dash in the ambulance to the hospital; the calm resolve of doctors doing what doctors do. Hour after hour, till finally hope seeps back and the memory gets flagged up to be suppressed.

Till unexpected moments when the memory bubbles up and briefly floods the mind. But always there is the laughter and the joking to wind the lock gates shut.

Always the morning after the night before is just another day.

Life always carries on… come what may.

Mui has every right to feel angry when she discovered her image was stolen and used in a “shock” video on YouTube. It reminded her, she said, of when she was cyberbullied.

Our daughter has not been raised to be a source of entertainment for weak-minded people.

It is, at the very least, frustrating.

The more Mui, we and others raise awareness, the more mainstream and less sensational “difference” will become. And more people will treat Mui like a human being rather than as an object of idle entertainment.

The tide is turning. People are much more willing to speak out against this sort of weak-minded exploitation than when Mui was a baby.

Your support is key.

Please help us raise awareness by signing our petition: http://www.ipetitions.com/petition/end-shock-videos/?utm_medium=social&utm_source=facebook&utm_campaign=button

Is it fanciful to hope to change attitudes?

In the 1970s the “N” word and racist jokes were not at all uncommon on children’s television... as a source of entertainment. Raising awareness has helped change that.

Why are we, as parents, still so deeply involved in our 22-year-old daughter’s life? Because she’s asked us to be.

Our daughter, Mui, has a very rare skin disorder. Most born with it die in childhood. She survived. It was a struggle. It took the courage of my wife to make Mui strong when everyone else turned the other way.

Then cyber bullies wanted Mui to kill herself.

Eventually, she batted away her suicidal thoughts.

But as a result of cyberbullying we’ve written a book. The “how and why” two ordinary people adopted an extraordinary child; and what we three have overcome before and since to still be here today.

We have no one to help us find a publisher besides our band of Facebook friends. But we’ve raised a daughter to adulthood alone and against all odds, so together we will soon get our book on the bookshelves. We welcome and appreciate your support.

This TEDx video is a response to the cyberbullies who wanted Mui dead.

Cyberbullying can happen to anyone.

Here's the link:

https://www.youtube.com/watch?v=aCXIpRNkVbw&index=1&list=FLxPU0NBQ4ty6pCTStBVPw0g

On April 18th, 2015 we were invited to give a TEDx talk in front of 700 people.

Mui’s initial response was: No way!

We discussed it as a family. We said if she were willing, we would step up together as a family.

Mui agreed to “give it a go”!

We’ll let you decide if she did a good job or not, and whether our family’s story is worth sharing.

So... what do you think?

Why write a book?
Because of recurring ignorance like last Thursday on the minibus.

On Thursday morning, Mui headed off to work as usual – to the Rock Foundation in Wan Chai.

Mui takes up the story:



I was running towards the minibus stop at Sai Kung Town Hall at about 8:25a.m. and though the minibus was almost full, I managed to get a seat near the front.

All seemed fine.

A few minutes later, as we were passing Lions Park, the driver started making some comments in Chinese and pointed to the bus stop ahead. I ignored him as I had no idea he was talking to me. The driver then stopped at the bus stop and pointed at me and indicated I should get off. I refused, and asked other passengers around me if someone could translate what the driver was saying.

I was told he was saying my face had allergies.

In Chinese, I told him I had a skin condition.

By now people were pulling out their earphones to listen.

Passengers said that the driver didn’t want me on the bus. I asked why. They told me he said that my face made him want to vomit.

Passengers were getting upset with him and saying this was “discrimination” and “there’s nothing wrong with her” and “drive the bus”.

I was in tears but I got it together.

A North American woman threatened to call the cops. She was also upset that this was happening and kept saying “this is discrimination”.

After almost five minutes standing at the bus stop with the driver saying my face made him feel sick and saying he wanted to vomit, a woman behind me offered to switch seats with me so we could just get to Hang Hau. We did that. She said she was going to report the driver and I thanked the woman.

When I got off, I wrote down the license plate number.

After that I rang my mum, but there was no answer. Then my mum rang back and I talked to my mum and dad. That helped because I was a mess by then. I couldn’t stop crying on the phone.

In a recent family interview for the German magazine Brigitte, we were asked:

‘What’s the best thing you’ve ever done as a family?’

We said: ‘Going on an all expenses 11 day trip to LA & Disneyland in 2004!’

Why? Because so many people across the whole of Hong Kong, people we did not know and had never met, came together to show their support for our family. For what we, as parents, had done for Mui, and for a little girl with a deforming skin disorder whom the government had condemned to live in an institution on the very fringes of society; who’d fought repeated blood and chest infections and hospitalizations; who’d endured abandonment and repeated rejection, and who’d now learned to live life with a cheery smile on her face. Companies and hotels and individual people came together as one, to show their support.

Two of the supporters we’ve never met were: Mareile and Matthieu Paley.

At the time, Mareile wrote to two of the organisers, Alison Whittle and Nisha Parmanand: “… we had both seen Mui in the Hong Kong subway together a few days before we left for Europe to get married. The little girl had left quite an impression on us just observing her from afar for this 20 min. subway ride. She was sad, because a little boy had stared at her and then run away and started crying. She seemed to argue with the adult (her mom?) she was with about the world being unfair, but she had such an aura of strength, determination and a will to live which we could sense… that told us that there is an admirably mature character behind her face.

We would like to donate some of the money so generously given to us by our friends and family for our honeymoon for Mui’s Disneyland trip.”

We’ve never expected support, or taken it for granted when it’s been given.

That’s why, 11 years later, the memory of our 11 days in LA & Disneyland still bowls us over!

Find more recollections check out our Facebook page: https://www.facebook.com/GirlBehindTheFace