Brave young girl with rare skin condition driven to brink of suicide by cyber bullies
But on top of her personal health battles she has told how she was almost driven to suicide by anonymous cyber bullies .
Though her appearance had little affect on her time at primary school, her move to secondary school was met with a barrage of vile insults from anonymous cyber bullies.
Worn down by their relentless abuse , Mui was driven to the brink of suicide.
Desperate to live as if she did not have a skin condition, she began to avoid vital treatment designed to help her.
She said: “I’ve blocked most of it out. It was an incredibly difficult time. The comments cut me to the bone. Ultimately, I wanted to commit suicide.
“Because I had no idea who was doing it and my tormentors were hiding behind a screen, I felt like I couldn’t trust anyone. To an extent, not even my own parents.”
Eventually after ten harrowing months, the tormentors were revealed to be classmates of Mui’s.
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But doctors warned that the prognosis for her condition was bleak, and she was unlikely to survive for much longer.
Rog said: “We had the constant threat that Mui might die hanging over our heads for years,”
"Slowly, she rallied, becoming more robust and suffering with fewer fevers and infections.
“But then, when she was a teenager, she was tormented to the point where she contemplated suicide. After everything she’d been through, it was almost anonymous cyber bullies that killed her.
“Cyber bullying can happen to anyone, regardless of who they are. It’s not just those with a visible difference, like Mui. In this age of rage, you’re always going to find people who want to be negative about everything.”
They fell into a whirlwind romance, getting engaged within two weeks and married within five months.
They decided to put the idea of parenthood on hold, opting instead to become weekend foster carers while they began planning a new life for themselves in Australia.
However, before they left Hong Kong, social services introduced them to Mui – and the couple immediately fell in love.
“We didn’t know anything about Mui’s case before we met her. All we knew was that she looked different,” said Tina.
“But we fell in love with her and her gung ho spirit straight away. There was no way we could have walked away and left her.”
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Rog said: “We could either go to Australia as planned and start our new lives, or we could give Mui a chance.
“Doctors had warned us she would die soon. A lot of people said we should walk away, but we couldn’t. We decided to become her parents.
“We’re just ordinary people. We aren’t medical experts, we have no idea what’s going to happen to her in the long run.
“We just stepped forward to do something good and help another person.”
At three years old, Mui was formally adopted by Rog and Tina.
But for years, she still grappled with her condition as doctors had no idea how to treat her.
It wasn’t until 2002 that the family first met with a specialist in Seattle who had dealt with itchyosis before.
Rog said: “This was all in the days before Google and the internet, so it was incredibly difficult to find information out about Mui’s condition."
Tina added: “From paediatricians to dermatologists, it felt like we were just being pushed around from one doctor to the next.”
One of the most challenging issues of harlequin itchyosis is that the skin does not have a barrier against germs, so Mui and other sufferers like her are left open to infection.
On top of this, Mui’s body has no temperature control and she cannot sweat, meaning dehydration is a prominent risk for her.
The oldest survivor of harlequin itchyosis is 31 years of age. At 22 now, Mui is the forth oldest person in the world with the condition.
Tina said: “We’re constantly telling her to drink lots of water.
“On top of this, she has to eat a lot more than the average person. She needs around 8,000 calories just to sustain enough energy to get through the day – and that’s without even doing anything strenuous.”
Speaking about taking on the bullies Tina said: “One of the worst things was that Mui was getting this abuse delivered straight to her home, where she was supposed to feel safe,” said Tina.
“Because they can’t see the face to face reaction of the person they’re bullying, they have no idea how much hurt they’re causing.
“If our story can stop just one person from sending that nasty message or Tweet, then we will have done some good.”
Speaking on stage alongside her parents, Mui said: “When I was a child, I once said: ‘Mummy, if there’s one thing I want for Christmas, it’s to have ordinary skin.
“All my life, I’ve wanted to be seen and treated as someone without my skin condition but as you can see I look a little bit different to most of you.
“When people see me for the first time, they’re not sure of how to react because I don’t fit into the norm. When people shout, scream or run away, I struggle with it.
“If someone asks me how I want people to react, I say I’d be happy with a simple hello. A smile would be nice too. But unfortunately, when people are in shock, that doesn’t always work out.
“At least I have the love and support of my parents, and not everyone gets that.”
Mui now works as a rugby referee – the only person in the world with her condition to do so.
She said: "All of my life, I wanted to get away from being some sort of Victorian freak show exhibit, even if it’s just for a little while. Then, three years ago, I found something that was both inclusive and welcoming. I discovered rugby.”
And aside from the motivational talks the family have been delivering in schools, they have written a book charting their life story called The Girl Behind The Face .
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