Despite her condition, she’s still making her own life matter, from the Front Page Sections, translated…
A student from Wanhua Middle School, Chang is diagnosed with the rare condition of hereditary epidermolysis bullosa, her body is covered with blisters, her arms and legs are dystrophic, she has difficulties, holding up a pen, but she’d still managed to fill up her drawing papers with the colors of life, in the future, she wanted to make picture books so more people will understand the rare condition.
As Chang was born, her skin was scarred, even on her tongue, there were, blisters, and as the bottle was placed in her mouth, she’d started crying out in pain; and, because of her narrowed esophagus, she could only eat liquids for the rest of her life.
During the earlier days, the medical realm didn’t know how to cope with this condition, after they’d put the ointments on her skin, they could only wrap her body up with bandages, and so, her hands became scarred and atrophied, her three fingers were conjoined to her palm and became deteriorated; whenever she walked, the soles of her feet blistered easily, and, she could only manage to walk ten steps at a time, and she’s now, relying on a wheelchair to help her get around.
Bath time for Chang is the most trying every day, she must peel off the artificial skin off of her body, then, wash and clean the wounds with medicated potions; normal people, with a cut contacting water, it’d be so very painful, and she must put up with the excruciating pains for three hours each and every time she’s being bathed. She said, that she couldn’t get any sun on her skin, couldn’t go with her classmates to the school shop during her break time, and, she couldn’t join the other students in physical education, she’d watched her friends played on in the sun.
Because her parents worked away, she was left in the care of her grandmother, and, every day, her grandmother would wheel her to and from home to school, and, they never missed a single day of school for nine years.
She’d projected her dreams of having a normal life and her gratitude for her families into her creations. Chang told, that she’d loved drawing out her families the most, trying to capture the way they looked, giving to her life. She’d made thirty to forty paintings so far, the family had framed each and every one of her work for keepsake, in the future, she planned to make a book of art, so more people can know her condition.
She’d stated, that she felt grateful toward her grandmother’s giving to her, she’d carried on in her four hours’ worth of homework assignments daily, didn’t care that her atrophied armed and hands would get tired, hoped to get into a pubic high school, so she could stand on her own soon, so the family wouldn’t have to worry about her, and she’d also, proven to the world that “although I have a disability physically, but I can still beat out others.”
So, this, is a young woman who refused to get beaten by her own life’s conditions, and, she’s making her life count, by making a difference, by working hard, to make her own life matter, and, because of her illness, she’d gained a better understanding of life than kids her age.
Life, the Obstacle Course 