"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
“You don’t know how it started... you’ll love how it ends”
Two decades and a thousand years ago Tina Thomas fell in love with an abandoned baby girl born with an appearance altering skin disease who was hidden away on the fringes of society. Tina was twenty-six years old.
Doctors said Mui would not survive infancy. One person can make a difference.
Resilience, commitment, prejudice, heartbreak, dark times, persistence, optimism... Twenty-five not entirely uneventful years later, Mui is the world’s first rugby referee and yoga teacher with Harlequin Ichthyosis!
She is the fourth oldest survivor with her disease in the world; a contagious smile lights up her face. Mui is twenty-six years old.
Doctors said Mui would not survive infancy. One person can make a difference.
Resilience, commitment, prejudice, heartbreak, dark times, persistence, optimism... Twenty-five not entirely uneventful years later, Mui is the world’s first rugby referee and yoga teacher with Harlequin Ichthyosis!
She is the fourth oldest survivor with her disease in the world; a contagious smile lights up her face. Mui is twenty-six years old.
The Girl Behind The Face is an initiative to raise awareness of visible differences, commitment and cyberbullying amongst the general public and decision-makers. It has been set up by Tina, Rog & Mui Thomas
We knew nothing. We were diving into the unknown... Life threatening visible difference... abandonment... ADD... High-functioning Autism Spectrum... Oppositional Defiant Disorder... any one of these can derail a person's life.
You can regard them as labels to hide behind or see them as challenges to confront.
Day-after-day, as parents, we have dealt with this reality. 25 years on, we are still doing so on a daily basis.
Raising a child under a developmental trauma umbrella like this can ruin relationships, destroy families and break up marriages. How do you cope? You don't have a choice… you have to; you roll up your sleeves and deal with it.
You can regard them as labels to hide behind or see them as challenges to confront.
Day-after-day, as parents, we have dealt with this reality. 25 years on, we are still doing so on a daily basis.
Raising a child under a developmental trauma umbrella like this can ruin relationships, destroy families and break up marriages. How do you cope? You don't have a choice… you have to; you roll up your sleeves and deal with it.
