Girl gets through tough childhood by depicting her life in art
When a young woman from Taiwan named Jingui saw her newborn baby for the first time, instead of joy she felt only worry. The medical staff didn't congratulate her, they warned her: "Be prepared, she might not survive. "
The heartbreaking fact was that even if her baby did live, she would suffer constant pain.
Jingui's daughter, Peijin, was born with a severe form of the rare genetic disease epidermolysis bullosa (EB), which leaves a person's skin blistered and bleeding over most of the body, most of the time. The open wounds have to be carefully covered to prevent any chafing. And the worst thing is there's no cure.
Peijin made it through the early days and grew into a delicate but lively little girl. Meanwhile, Jingui learned how to care for her daughter under these highly unusual circumstances.
It's hard to imagine how tough it is to raise a child with this condition. Sometimes they spent up to eight hours a day dressing the wounds. Every time her mother would pull off a bandage, Peijin endured extreme pain. Sometimes Jingui would have to cut the blisters open with scissors and remove the fluid in them with a syringe.
That's how Peijin spent her childhood: every time she finished bathing, the floor was covered with blood. "I don’t even know what it's like to be without pain," Peijin said. But Jingui was determined that the disease wouldn't defeat their spirits: "I wanted to let the whole world know that I could take care of my beautiful girl and her life would be colorful and fun."
Her mother's encouragement and optimism became Peijin's backbone. She grew up fully believing she could achieve whatever other kids could. She attended school, joined clubs, and participated in a range of activities, trying out as much as she could. Eventually she discovered her great passion for drawing.
She still remembers the first time she picked up a paintbrush: seeing the paper slowly fill with colors, she felt happy despite the pain caused by her movements. They couldn't find a teacher, so Peijin began learning on her own. Jingui bought her art books and practiced with her. Sometimes the girl would bleed onto the page, but nothing could stop her.
Three years after first lifting that brush, Peijin finished her first book, which described her life with the disease in pictures.
Her art was compelling and made its way into the spotlight with more and more people not just seeing her drawings, but learning about her condition too. Eventually her art was viewed by the father of a boy with EB, who recounted in tears, "finally, there's someone who depicts our life as it really is."
Peijin still says it's hard to describe with words how difficult those years of childhood were. Daily life meant even being careful when swallowing a spoonful of rice, so as not to hurt herself.
Sometimes she felt desperate and discouraged, feeling guilty for being such a burden on her mother. But Jingui would tell her, "I believe every life has meaning. If you're happy, then I'm satisfied. You don't owe me anything."
Today, Peijin is a role model for others in her situation. She earned a bachelor's degree and works at a broadcasting company. It's in Chinese, but you can see more of her art in this video report: