Girl with life-threatening skin condition bullied to brink of suicide

 A 22-YEAR-OLD, whose body is red-raw from a severe skin condition, was so badly trolled by cyber bullies that she considered taking her own life.

 By Laura Mitchell

BRAVE: Mui Thomas suffers from a rare skin condition called harlequin itchyosis

 Mui Thomas suffers from harlequin itchyosis, meaning she sheds the same amount of skin overnight that most people do in a fortnight. This leaves the brave young woman in agonising pain as her body is raw and prone to infection. Abandoned at birth and taken to a hospital, her now parents Rog, 52, and Tina, 47, started to care for her when she was little over a year old. 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."

 She was adopted by Rog and Tina whens eh was three years old

 Rog, from Cardiff, Wales, and Tina, from Frankfurt, Germany, met on a filmset in Hong Kong and were married within five months. After deciding to become weekend foster carers they met 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. There was no way we could have walked away and left her." “The nasty comments cut me to the bone” Mui Thomas At first, Mui lived in hospital, staying with Rog and Tina at weekends. When she was placed in a government institution that Rog labelled as "completely unsuitable" for her healthcare needs, the couple had a difficult choice to make.

 "We could either go to Australia as planned and start our new lives, or we could give Mui a chance," said Rog. "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." At three years old, Mui was formally adopted by the couple. Her life was far from easy and she was constantly bombarded with stares, comments and, on occasion, screams and points from strangers. 

 SORE: At 22-years-old, Mui is the fourth oldest person in the world with her condition

 But it was when she reached high-school that the bullying became out of control. She was met with a barrage of vile insults from anonymous cyber bullies. And 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 treatment. "I've blocked most of it out. It was an incredibly difficult time," said Mui. "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," she added.

 Eventually after ten harrowing months, the tormentors were revealed to be classmates of Mui's. "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," she added. Last month, the family delivered a talk about their experiences in a bid to raise awareness of the devastating impact the bullying can have. 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."

 STRONG: The brave rugby referee has written a book about her experiences

 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, her body has no temperature control and she cannot sweat, meaning dehydration is a prominent risk for her. The oldest survivor of the debilitating condition is 31 years of age. At 22, Mui is the forth oldest person in the world with harlequin itchyosis. To try and soothe the symptoms of her disorder, she must take daily two hour baths in an attempt to scrub off layers of dead skin and apply ointment routinely throughout the day. But now Mui, who works as a rugby referee, has risen above the bullies and is thankful for the positive experiences her visible difference has brought her. "I think that having a disorder has led to some pretty cool encounters. Who can say that they've met supermodel Kate Moss in her hotel suite, and former British Prime Minister Tony Blair? I can," she said. "Who can say that they've been flown across the world to California on an all-expenses paid trip to Disneyland? I can. "So for all the bad encounters that I've experienced, there is always something positive." 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. They have set up a website as well as Facebook and Twitter accounts, all also titled The Girl Behind The Face.