In a deep ravine in Xinglong County, Hebei Province—where cell phone signals are intermittent and the mountain roads twist endlessly—14-year-old Yaoyao is enduring days that are unimaginable to most. Her skin is extremely fragile, as beautiful yet as delicate as a butterfly’s wings—she is a “Butterfly Child” (a patient with Epidermolysis Bullosa). Yet her suffering is far beyond what such a romantic name can convey.

To Live Is a Grueling Journey

Entering Yaoyao’s home, the weight of life is immediately palpable. Every month, Yaoyao’s essential medications and dressings alone cost over 10,000 yuan. To treat her illness, her father took on the toughest job as a miner, but he passed away last year from pneumoconiosis. Her brother quit his job in Beijing to care for their sick father, and now, together with his girlfriend, sells cold noodles in Anhui, earning only 3,000 yuan a month—barely enough to get by. Yaoyao’s mother bears all the burdens alone: farming and caring for Yaoyao. Even when she lost a tooth, she couldn’t bear to spend a few hundred yuan to have it fixed. The village has classified them as the highest level of low-income households, granting the mother and daughter 1,100 yuan per month, all of which the mother spends on Yaoyao’s medicine and gauze, leaving nothing for herself.

A Lifeline of 6,000 Yuan, Swaying in the Storm

Fortunately, a group of anonymous kind-hearted people has stepped in, covering about 6,000 yuan of Yaoyao’s critical monthly medical expenses (mainly for imported dressings). This sum is a vital lifeline for Yaoyao’s survival. The remaining 4,000 yuan is cobbled together by Yaoyao’s mother with help from neighbors and friends. Even so, this support is far from stable. Some donors have hinted that they may not be able to continue their assistance. When volunteers carefully broke this news to Yaoyao’s mother, this resilient woman instantly felt as if “the sky had collapsed.”

Yaoyao’s Daily Life: Pain, Perseverance, and Glimmers of Hope

Every other day is the most painful time for Yaoyao and her mother. Without anesthetics, her mother must use saline to wash Yaoyao’s ulcerated and fused skin, then painstakingly remove the old ointment and dressing bit by bit with small pieces of gauze. This process takes as long as six hours.

Witnessing their endless suffering from the pain of changing dressings, Changier volunteers helped them choose slightly more expensive imported dressings. The reason is simple: regular dressings need to be changed every day, but imported ones can last an extra day, giving her mother a brief respite to tend to the fields and eke out a living.

During busy farming seasons, mother and daughter often skip lunch. Because Yaoyao’s digestive tract can also ulcerate and bleed, she cannot eat anything hard. For breakfast, she has two potatoes baked in wood ash by her mother. Dinner is soft-boiled noodles with a little egg. On days when volunteers are not around, they just have instant noodles. “As long as we have enough medicine, saline, and gauze, that’s good enough—we don’t need money.” This is Yaoyao’s mother’s humblest and most urgent plea.

Despite being physically confined, Yaoyao is a cheerful girl. When Changier volunteers visit, she often asks, “Auntie, can you stay here for a day?” With her hands curled into “meatballs” (due to repeated skin damage and fusion), she struggles to use a mobile phone. In a world severely lacking in information, she still longs to find a connection and comfort with the outside world through a tiny screen.