When children come into this world, neither they nor their families know what life has in store for them. In the space of five months, Rog and Tina Thomas met, fell in love, and married. Their whirlwind romance began when their paths crossed in Hong Kong. The couple knew they wanted children but not immediately. All this changed when social services introduced them to a baby girl named Mui.
The newlyweds instantly fell in love with the orphaned child. They hardly noticed she didn’t look like most children. And they didn’t care.
Doctors said Mui’s health was declining; they didn’t know what she suffered from. Still, Thomas’s loved her. They refused to abandon the little girl as her biological mother had. They officially adopted her when she was 3-years-old.
Even though the threat of Mui’s death is a real possibility, she rallied and railed. Finally, in 2002, she was diagnosed with harlequin ichthyosis. This is a rare genetic skin disease that causes her to shed the same amount of skin in one night than most people do in two weeks. This leaves her skin raw and bright red. It also makes her more prone to infection.
Though her parents loved her, others who came into Mui’s life weren’t so kind or understanding of her condition. Middle school was a particularly difficult time for the adolescent girl. She faced nasty insults, taunting, and shouting from her peers. No one showed her compassion.
Mui refused to let the bullies win. She was going to live a life like everyone else. She tried blocking out the pain from the abuse. She refused treatment designed to help improve her condition. Despite her bravery, Mui eventually grew worn down by the cruelty she faced. She contemplated suicide.
Now 23, Mui is the fourth oldest person living with Harlequin Ichthyosis. She found her passion that ended up saving her life. You won’t believe what it is. See for yourself how Mui lives her life despite her painful condition.