The Girl Behind The Face
“The remarkable story of Mui Thomas might bring a tear to your eye.” The Guardian newspaper.
Cyberbullying put all three of us where we never wanted to be: on the front pages of a newspaper.
Our family story is a real life narrative. While preparing to start a new life in Australia, Tina and I met an abandoned baby girl in a hospital playroom. Mui was then hidden away on the fringes of Hong Kong society because she was born with an appearance altering skin disease, Harlequin Ichthyosis. Tina was just twenty-six years old.
Doctors made clear to us Mui would die in infancy; the authorities insisted we acknowledge the medical prognosis; they insisted on our silence. People told us to walk away.
We fought so hard, Mui rose so high… she thrived, she inspired, we celebrated. Cyberbullying destroyed all of that. Discrimination has cut to the quick.
As parents, we doubled down. Each time, and with resilience and determination the three of us have rebuilt.
Twenty-five not entirely uneventful years later, Mui is the world’s first rugby referee and yoga teacher with Harlequin Ichthyosis! A contagious smile lights up her face.
Mui is part of the first generation of survivors in the world with Harlequin Ichthyosis.
As a family, we have grown, we have learned and we continue to celebrate, and as a family – parents and daughter, two sides of one coin – we share our story.
We speak at schools, NGOs and corporates. We are committed to making a difference.
And still, cyberbullying impacts Mui and us; it still leaves invisible scars.