“The remarkable story of Mui Thomas might bring a tear to your eye.” The Guardian newspaper.
Mui Thomas was born with a rare skin disease, Harlequin ichthyosis. She was rejected at birth and hidden away in an institution by society – a reminder of the terrible cost of not standing up for others.
By chance, Tina Thomas met Mui.
What makes a 26-year-old woman, the granddaughter of a Holocaust survivor who was driven to a teenage breakdown, give up her dream, her job, her career and narrow her focus to challenge stereotypes and society that labels and rejects a little girl born with an unusual face and with the prognosis: “death in infancy”?
And what happens as that abandoned little girl with a different appearance grows up and becomes a woman, a yoga instructor and the world’s first rugby referee with Harlequin Ichthyosis, as well as an Asia Rugby Unstoppable Ambassador?
Mui says: “I am the poster girl for what happens when strangers stand up for someone else.”
Mui Thomas was born with a rare skin disease, Harlequin ichthyosis. She was rejected at birth and hidden away in an institution by society – a reminder of the terrible cost of not standing up for others.
By chance, Tina Thomas met Mui.
What makes a 26-year-old woman, the granddaughter of a Holocaust survivor who was driven to a teenage breakdown, give up her dream, her job, her career and narrow her focus to challenge stereotypes and society that labels and rejects a little girl born with an unusual face and with the prognosis: “death in infancy”?
And what happens as that abandoned little girl with a different appearance grows up and becomes a woman, a yoga instructor and the world’s first rugby referee with Harlequin Ichthyosis, as well as an Asia Rugby Unstoppable Ambassador?
Mui says: “I am the poster girl for what happens when strangers stand up for someone else.”
Tina Thomas, S.A.C. Dip. (Child Psychology), S.A.C. Dip. (Advanced Psychotherapy), S.A.C. Dip. (Special Educational Needs)
Diploma (Post Traumatic Stress Disorder)
Rog Thomas, BSc. Applied Economics, S.A.C. Dip. (Child Psychology)
Mui Thomas, Rugby Referee, Yoga teacher
Diploma (Post Traumatic Stress Disorder)
Rog Thomas, BSc. Applied Economics, S.A.C. Dip. (Child Psychology)
Mui Thomas, Rugby Referee, Yoga teacher
Mui says: Our family initiative, The Girl Behind The Face, is about standing up for others. It was originally set up by my parents to help me. They are the ones who run it and I’m happy and excited to be a part of it. I see myself as the poster girl who just enjoys getting out there and doing things. To paraphrase our upcoming book: “Sharing our story is our response to the cyber bullies who taunted me to kill myself.”
An unusual appearance, ichthyosis, abandonment, High-functioning Autism Spectrum Disorder (ASD), Pathological Demand Avoidance (PDA ), Reactive Attachment Disorder (RAD), Attention Deficit Disorder (ADD), can destroy a person and a family.
"Ms Thomas' parents helped her through the dark times and together they set up 'The Girl Behind The Face' Facebook page in an attempt to help educate people on the disorder." Daily Mail
“We were told our daughter would be better off dead.”
Mui is the world’s first rugby referee and yoga teacher with Harlequin Ichthyosis. She is part of the first generation of survivors, and is the fourth oldest survivor with her disease. Mui is twenty-nine years old.
