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Poor boy with rare disease gets a chance
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A seven-year-old boy who was born with his bladder outside his body will receive reconstructive surgery that should go a long way toward improving his life, thanks to the generosity of people in his home province and a Shanghai hospital.

The child is far from being out of the woods yet, however. Doctors at the Children's Hospital of Fudan University agreed yesterday to perform the surgery, but they were uncertain about the prospects for success.

"The boy missed the best time for treatment. He is too old to be completely cured, but we will try our best to improve his living quality," said Wang Yi, a hospital vice president.

Born in 2002 in a village in Jining, a city in Shandong Province, Zhang Mingyang suffers from bladder exstrophy, a rare disease.

The abnormality has left the boy unable to control his bladder or bowels, and he suffers recurring infections. Unable to afford surgery, the family of farmers couldn't give the child proper treatment and his condition worsened. The constant dripping of urine has atrophied his legs.

"He suffers severe pain that reduces him to tears," said the boy's father, Zhang Xueyu. "He mostly stands because sitting is too painful. It is also too painful for him to sleep well at night."

Zhang, who has a sister and a twin brother with no physical abnormalities, can't go to school and has no friends. His father took him to beg in the cities to raise money for his treatment.

Generous Yantai

The boy's plight came to public attention after a story appeared in a newspaper in Yantai. The people of that Shandong city raised 90,000 yuan (US$13,166) for the boy when they learned of his condition. And with the help of reporters in Yantai, the Zhang family began to look for big hospitals able to operate on the child. After treatment was declined in Beijing and Guangzhou, Shanghai was the last hope.

"If we hadn't accepted him, the poor boy would never be treated. We didn't want to see that," said Wang Yi, an official at the Shanghai hospital.

Zhang Mingyang will receive surgery in a couple months. Hospital officials said the first step is to put the boy's bladder inside his body cavity.

The hospital said it will help the family cover the medical expenses, which will exceed the 90,000 yuan collected by the father. The cost of the treatment was not revealed.

(Shanghai Daily June 25, 2009)

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