Growing up, Mui Thomas always tried to have as normal a life as possible, despite knowing that she had a rare condition meaning she could die young.
Mui was born with a rare genetic skin condition called Harlequin Ichthyosis.
The condition, which causes children to be born with very hard, thick skin covering most of their bodies, affects around one in every 300,000 babies.
Only around 200 cases have been reported around the world.
Mui Thomas is thought to be one of the oldest people known with harlequin ichthyosis, as children with the condition often die as they are vulnerable to infection as their skin cracks.
But for the 26-year-old, who works as a special needs teacher, rugby referee and yoga instructor in Hong Kong, it's all she's ever known.
"When people meet me for the first time, sometimes they think I’ve been sunburnt as my skin is quite red and raw," she said.
"My skin grows ten times faster than someone with ordinary skin, so my skin constantly grows and I shed skin constantly.
"My daily routine includes a bath every morning to soak off the dead skin that has grown overnight. This process is followed by a full body cream from head to toe.
"I do re-apply cream throughout the day because its important to keep my skin moisturised or it dries out and I run the risk of getting painful cracks in my skin.
"During the day I usually do my arms, face and legs if I’m wearing shorts. I also try to stay as hydrated as possible and I also eat a lot.
"I have been told that someone with my skin condition should eat up to 8,000 calories a day in order to keep up with high energy levels. I don’t eat that many calories in a day, but I do eat a lot as I also have a very active life."
Abandoned by her biological parents, Mui was adopted by her parents aged three.
She now lives with dad Rog Thomas, 56, who is originally from Llandaff in Cardiff, and mum Tina, 50, from Germany, the birth-granddaughter of a Jewish, Auschwitz concentration camp survivor.
"Growing up with my parents was as normal as possible," Mui said.
"They met me when I was one-and-a-half years old in a hospital ward and I was formally their daughter at three.
"My mum fought unbelievably hard to help me survive. All the bad things that happened in my mum’s childhood made her want to fight for me.
"My mum and dad ignored people who said they should walk away. They have never treated me with cotton wool, they always encouraged me to go out and challenge myself.
"Even though my health was really unstable as a child, they always made sure I had fun. If I fell, they would hug me, clean me up and send me running again.
"They constantly rushed me to the emergency rooms in hospital because my health was so unstable.
"Doctors thought I would die in infancy and my parents had to cope alone with that. My parents never hid me away as many people suggested. This has helped shaped who I am today.
"People have asked me if I ever want to meet my biological parents. As far as I’m concerned, my parents are the ones who raised me and were there for me when I needed it, and are still always there for me.
"My parents have always encouraged me to go out and 'give it a go'," Mui added.
"They have never held me back from doing what I want (within reason).
"When I was younger my dad always told me 'do you want to have a happy day or a sad day?', referring to when I’d get taunted by people for looking different."
But despite her health fears, Mui struggled with children at school and was the victim of cyberbullying in her teens.
It led to her thinking about committing suicide.
"There are certainly mean people around," Mui said. "But the positives tend to outweigh the negatives.
"When people stare and freak out at my appearance, my reaction is sometimes calm, but other times, I get quite upset because all I want is to be accepted just like anyone else.
"I've had everything from screaming kids to full blown adults covering their eyes and running away."
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"When I was being cyberbullied around the age of 14-15, I honestly thought that life would be better if I just committed suicide because the messages I got implied that I was unwanted and a burden to everyone around me," Mui added.
"I wrote a note and gave it to my mum who was very upset by it.
"I was heartbroken. I just thought if nobody wanted me around, nobody wanted me alive then I thought the best thing I could do would be to end it all.
"I felt I couldn’t trust anyone around me. I had few friends, so not knowing who to trust was hard. I was in constant fear of anyone at school and out, who were genuinely trying to be nice and caring.
"My mum and dad tracked down the bullies. I found out later on, that the cyber bullies were from school, in the year above me.
"One simply thought that his comments were just a bit of harmless fun.
"It wasn’t fun for me at all and the fear stick with me to this day.
"I still question people’s motives for being nice to me.
"I still fear every time I get a new message from a stranger. Even recently, I had some very nasty messages on social media which pushed a trigger in me. It made me weary and fear about everyone around me."
But in 2015, Mui and her parents set up a Facebook page, Girl Behind the Face, to try and tackle the stigma around the condition.
"My parents and I set up The Girl Behind the Face in 2015 to raise awareness of commitment, cyberbullying and visible difference, and to help me because my life wasn’t going very well at that time," Mui said.
"Because of the support from our Facebook page the Girl Behind the Face, people came using forward to offer words of support and encouragement.
"That made a big difference, as social media was just starting when I was 15.
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"We are going to self publish our book this year to help build a platform to help other people and to raise awareness of visible difference, cyber bullying and commitment, three main features of our family’s story.
"It’s a pretty raw and no holds barred kind of fast paced book but we hope that by sharing our story, the good, the bad and the ugly, we can hopefully support other people who may not have been as lucky as I was growing up, and it might inspire ordinary people to help others in their community too.
"It’s taken a while to understand just how unbelievably lucky I have been in my life and not everyone has that luxury. "
Now also through rugby, Mui has found a place where she can be treated equally.
"Rugby has played a huge part of my life," she said.
"It is an opportunity for me to be treated as a human being not as someone who looks different.
"Growing up with a Welsh dad meant rugby was always on TV at home. I wanted to play but my dad told me that was a bad idea because I had brittle bones at the time.
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"He told me to go down to the local rugby club to help out. I’m stubborn and I argued but I went. Everyone was great! I think because I’m stubborn someone suggested I try refereeing! The rest is history.
"Rugby has taught me that there is something for everybody."
Dai Rees, Chief Rugby Operations Officer for Hong Kong Rugby Union said that Mui was "very special".
"Her positive passion and drive for Life, HK Rugby and Wales is unrivalled," he said.
"I feel privileged to know, work with and call Mui a very special friend to me and my family.
"She has a naughty and wicked sense of humour that makes people smile all day long!
"Mui Thomas is an incredible, inspirational and much loved human being."
Mui's dad Rog added: "As parents we have, for 25 years, fought tooth and nail against discrimination relating to Mui's visible difference.
"Rugby has given Mui the opportunity to be treated as the equal of anyone."
"Sometimes I feel like having harlequin ichthyosis is a bit of a burden because sometimes I do wish I had ordinary skin," Mui added.
"There have been times I’ve wondered what life would be without HI.
"But I do know that if I didn’t have HI, my life would be very different."
