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Public donations aid boy, 8, who defies medical opinion

By Song Wei (chinadaily.com.cn) Updated: 2015-01-26 16:08

Public donations aid boy, 8, who defies medical opinion

Liuchen's mother wipes a sore on his face. [Photo/CFP]


Help floods in from across the country bringing hope to family

The plight of Song Liuchen, from a village in Shangqiu, Henan province, who has confounded medical experts by fighting epidermolysis bullosa (EB), a rare skin disease, since birth, has caused a nationwide sensation.

Many kind-hearted people have offered help since his predicament was highlighted in the media. As of last Tuesday, Liuchen had received 1,090 donations, totaling 327,952 yuan ($52,659). 

Prestigious hospitals in Beijing, including the Children's Hospital and Peking University Third Hospital have offered treatment for the little boy, Henan Daily reported.

Babies diagnosed with EB usually do not survive beyond two years. A doctor, who declined to be identified, said she had never seen children with the complaint live up to 8 years during her 33-year career.

Liuchen's fragile skin blisters and festers every time it is touched, causing the boy severe pain from the simple activities of daily life such as walking or putting on clothes due to the friction.

His parents Song Zhongmin, 43, and Wang Xiaying, 39, said that when the child was born he cried continuously for 12 hours and doctors suggested he may have EB.

The diagnosis was later confirmed by a specialist in Zhengzhou, capital of China's Henan province, but doctors were unable to prescribe effective treatments.

The couple has tried numerous folk recipes without success and the only thing they've learned over the years that can help their child is patience and care.

Instead of using gauze to wrap Liuchen's body, his parents tried tissue paper to prevent blood from seeping from his lesions. When dampened with salt water it is easier to take off. "Liuchen still cries every time we take the tissues off, no matter how gentle we are," his father said.

Winter is usually the most comfortable time for the boy because in the summer heat Liuchen's condition deteriorates, according to his parents. His mother has to change his bed sheets every day as they are covered with blood and discharge.

Wang can't help but cry when she sees her son suffering, but Liuchen comforts his mother by saying: "It doesn't hurt that much. I can endure the pain, and I will try my best to live, with you, mom."

Liuchen attends second grade at a regular school where he excels in his studies.

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