6-year-old Jualie Ebbing is discussed all over the world these days. Because Julie is modeled by Vogue, the world’s most prestigious fashion magazine. The gamblers suffer from the rare genetic disease albinism. Skin and hair become yellow in it. This disease makes it susceptible to sunlight. Eye light can also go. Jueli has only 8% light in his eyes.
Parents of the Chinese-born Jewelli left her in an orphanage, as a child suffering from the disease in China considers it a curse. Tantrik claims to have the untimely treatment of serious diseases from the limbs cut off from such children. “I had a child policy in China at the time of my birth,” says Jueli. A child like me is either left in an orphanage or killed.
Otherwise, on the way to school, eyes and head hair are blackened so that no one knows about the disease. I was lucky to have survived. The name Jueli was given to me in the orphanage. The meaning of Xu – of ice and Eli – is beautiful. At the age of three, the Netherlands family adopted me and I moved there. The parents who gave birth did not leave any information about me, so I do not know my birthday. The doctor examined the hand bone and told that I am about 15 years old. ‘
A few years ago, my mother came in contact with a designer in Hong Kong,” says Juelli. His son is also suffering from some disease. She wanted to make such clothes for him so that no one could pay attention to the disease. Since then, we run the ‘Perfect Imperfection’ campaign.