When Roger and Tina Thomas found baby Mui in a hospital in Hong-Cong, she was a little over a years old.
There was also something quite a bit different about her, that led her soon-to-be adoptive parents to feel that they had to adopt her right away.
Mui Thomas has harlequin itcthyosis, a condition that leads sufferers to lose the same amount of skin overnight that most people do in two weeks. This leaves her skin red, raw, and peeling most of the time, and leaves her vulnerable to infections.
When her parents found her, her prognosis was not optimistic. Doctors thought she wouldn’t live to see adulthood. She was plagued with fever and infection.
Her father, Rogers, said, “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.”
But they struggled medically for years, as doctors knew little about the condition and didn’t know how to treat her.
Her skin doesn’t heal, so she’s left open to infection all the time. She also cannot sweat, meaning that dehydration is always a risk.
“We’re constantly telling her to drink lots of water,” says Tina.
But this isn’t even the extent of her struggles. “On top of this, she has to eat a lot more than the average person. She needs around 8,000 calories just to sustain enough energy to get through the day—and that’s without even doing anything strenuous.”
But the worst part for Mui was, of course, the bullying.
She got cyberbullied almost to the point of suicide by classmates. After being picked on so often, and anonymously, she began to avoid treatment.
“In this age of rage,” says Roger, “you’re always going to find people who want to be negative about everything.”
But over the years, Mui has gotten stronger. She’s now the fourth oldest person in the world with itcthyosis, at just 22. The oldest survivor is 31.
Her family is spreading awareness about bullying and its effects. Refusing to become what she calls “a Victorian freak show exhibit,” she now is the first ever person with her condition to be a rugby referee. She hopes one day to go international with her career.
