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It was a Monday morning in 1996. 7-year-old Wang Li stared enviously out of the window. A line of children streamed by chattering away, their backpacks weighed down with books.
Wang pressed her cherubic face up against the window and waved at the children.
Some waved back and some pointed with disgust. In a moment, they resumed their banter and soon disappeared from sight; they were heading to school again.
Ever so slightly, Wang moved her face from the windowpane in silence, leaving an imprint of a tear.
Wang had a cleft lip, a congenital defect that creates an opening in the upper lip between the mouth and nose.
She had never known proper school. The first few attempts were so fraught with ridicule and embarrassment that she withdrew and remained largely confined to her room.
Wang's parents, both uneducated farmers in Likou Town in East China's Jiangsu Province, did backbreaking work at the local plywood factory. Their reward was less than US$25 per month, barely enough to feed the family. They supplemented their income by growing corn, rice, and wheat and raising a few pigs.
Life was such a struggle that Wang's condition received scant attention. But for the 7-year-old, the disfigurement was real and fuelled her rapid spiral into self-imposed isolation.
The first ray of hope into what she saw as a hopeless situation came one day in the shape of a rubbish collector.
He noticed the cleft lip and told Wang's father of free surgery for the condition at a Nanjing hospital. Travelling by foot and train, it took the girl and her father days to reach the capital of Jiangsu Province. She was quickly approved for surgery and 45 minutes later, the new girl emerged.
"When they gave me a mirror after surgery, I saw a different person looking back at me a smiling person. I think that was the first time I ever smiled. Since then, I have not stopped smiling," she recalls.
After the surgery, she could go to school for the first time in her life. The strange looks from others disappeared and Wang started to hold her head high in front of strangers, without fear she might be ridiculed.
"Before the surgery I felt uneasy meeting people, even relatives. But now I spend most of my time with my friends and classmates, instead of sitting at home all day," she said. Now 16 years old, Wang is a second-grade student in a local middle school, catching up her lost years of schooling. She is studying hard in the hope that she can fulfil her dream of becoming a doctor one day. "I hope I can help children with cleft palates like me," she said.
Year-round help
Wang was the first cleft-lip victim to be helped by Smile Train, the world's largest charity dealing with this condition. Driving into China in 2000, the Smile Train has already provided free cleft surgery to 80,000 poor children in the country.
Most children with cleft defects share Wang's experience. They are invariably born into poor families and remain hidden because of shame and isolation. Even more tragically, many newborns with the defect are abandoned.
Yi Yun, a girl from Hunan Province, was abandoned 16 years ago by her parents. She remained in an orphanage for the next two to three years until her uncle adopted her.
The grinding poverty in her new home required her to work very hard, helping with farm work and family chores. Her cleft greatly affected her speech and made it difficult for her to communicate with others. Five years ago, a free surgery provided by Smile Train has changed her life. For the first time she has been able to go to school and speech training is helping her to speak properly.
The founders of Smile Train were originally part of another children's charity that specialized in sending American doctors and medical missions to developing countries. They spent years travelling around the world, providing free surgery to thousands of poor children.
But for every child they helped, there were many more that they had to turn away. This heartbreaking experience of turning away literally thousands of children was behind the emergence of Smile Train in 1999.
"Our goal is to find a way to help every child that needs it so that no child is left behind. We want a programme that will help children year-round and not just for two weeks a year. And we want a programme that truly develops self-sufficiency," said Charles B. Wang, chairman and founding director of Smile Train.
Training the doctors
Unlike other organizations that send visiting medical teams, Smile Train aims to empower local doctors with the skills necessary to perform cleft surgeries and help children in their own communities.
In co-operation with the China Charity Foundation (CCF) and through partnerships with 135 hospitals throughout China, Smile Train has trained more than 4,000 medical professionals in all provinces and municipalities.
Since 2001, Liu Xinhua and four other colleagues in the First People's Hospital in Jinzhong of Shanxi Province, a Smile Train partner hospital, have provided about 2,000 free operations for poor children in the province.
"At first, many rural Chinese did not know that the clefts could be treated and a lot even doubted if free surgery would really be of any help," said doctor Liu.
The doctors had to often drive to remote villages to spread awareness about the condition. Print advertisements, posters, TV advertisements were also used to help the hospital reach out to more poor people.
The Smile Train has also set up a Chinese Medical Advisory Board. The multi-disciplinary experts on the board volunteer their time and decades of experience to educate local surgeons on better surgical methods.
Dr Liu said he had benefited greatly from such help and the patients he operated on have now hardly any trace of cleft scars.
The combination of surgery skills, the children's own health condition and the care from their parents have greatly improved recovery rates, he said.
Children with a cleft palate a defect in which the roof of a newborn's mouth does not completely join the mouth commonly develop the kind of speech impairment that is often difficult to correct.
"Full recovery in such cases involves the combined efforts of a team of specialists including a paediatrician, surgeon, dental specialist, speech-language pathologist and psychologist," said Liu.
However, he added, such comprehensive treatment after surgery is only available in large hospitals in the big cities. Rural children rarely have access to such services.
To date, more than US$29 million in funds have been made available in China for free cleft surgery. Local Smile Train hospitals in China are currently sponsoring 1,250 operations every month, with the average patient being 5.8 years old.
The Smile Train has announced its Phase II initiative, which will help the charity work towards its goal of doubling the number of partner hospitals in China, increasing the number of operations to 30,000 a year, and launching a mass public awareness campaign.
(China Daily November 14, 2005)
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