Internet Acts as Lifeline to L.A. for Sick Chinese Boy

Little Shao-han Deng has flown thousands of miles to get a second chance in life, but geographic distance is nothing compared to the vast digital landscape his story has traveled.

The 3-year-old boy from a remote province in northern China suffers from a rare congenital heart disease. Doctors in his country have given him no chance of survival. But now, thanks to his parents’ persistence, the power of the Internet and the kindness of strangers it generated, Shao-han has a shot at a heart surgery that may save him.

Through Web sites and e-mail, people from Australia to Sweden to Simi Valley have provided more emotional support, money and medical referrals than the boy’s family could have imagined.

“The Internet put everything together in this case,” said Dr. Juan Alejos, a pediatric cardiologist at UCLA Medical Center who is overseeing Shao-han’s case.

The boy’s battle is far from over. An area Chinese Christian organization today will kick off a worldwide drive to raise the several hundred thousand dollars needed to finance a series of operations.

Yongxin Deng, Shao-han’s father, has never met most of the people who have helped. They were just e-mail addresses on his computer screen.

A Simi Valley family, who heard about the child’s plight through his church, offered Deng, his wife and son a place to stay.

“Of course I’m grateful to all these people,” said Deng, chopping vegetables Wednesday at the restaurant owned by his host, Steven Tzeng. “In my mind, I can never return the help they gave me. I think the best thing I could do in the future is to help other people.”

When Chinese doctors first diagnosed Shao-han’s terminal disease late last year, Deng was in Australia pursuing a doctorate in soil science and plant nutrition.

Regular Checkup

“I called my wife as usual,” Deng said. “We talked briefly because of phone costs. I asked, ‘How is our son?’ And she cried.”

His wife, Han Dan, had taken Shao-han to a hospital for his regular checkup. The doctors found a heart condition that they deemed irreparable.

Shao-han’s heart has only one ventricle instead of two, meaning it must pump harder than a normal heart. The added pressure creates hypertension in the arteries, which is fatal in the long run. The Chinese doctors told Han Dan that her only child could die any minute and said it was a miracle he had lived that long, the father said.

Deng immediately logged onto the Internet, a tool he lacked in his home country, to research medical and charitable groups. He sent more than 500 e-mails using the heading “Seeking help to save my son.” He wrote to the World Health Organization, International Red Cross and so many others that he lost track.

“I wanted to do anything, even with the least possibility to help my son,” he said.

Deng’s cries for help in the digital dark brought a response from a Swedish human rights organization that offered to put up a home page for Shao-han.

Then an Internet-based support group for parents of children with heart disease, PDHeart List, read about his story. A member in Los Angeles responded to an e-mail Deng had posted to the group’s electronic bulletin board; another member in Oregon saw the Swedish home page and contacted him.

“You feel really alone when something like this happens,” said Brenda Isaacs-Booth, the Los Angeles member whose own 2-year-old son was born with heart disease. “I would expect someone to do this for me if I were in this situation.”

Booth said that when her son’s diagnosis was made, she was told that surgery would not save him. But she sought other opinions and finally found a doctor at UCLA Medical Center who offered to operate. Now she pitched in to help the Dengs.

The Oregon member, Mary Anne Wehland, offered to contact numerous hospitals in the U.S. to get second opinions on Shao-han’s case. One of those doctors she e-mailed was UCLA’s Alejos.

Alejos told Wehland that Shao-han needed a cardiac catheterization--a key test of blood pressure in the heart--before he could make an evaluation.

After three months of e-mail correspondence, Deng, his wife and son were flying to Los Angeles last January and making appointments with cardiologists at UCLA.

Booth helped raise the $12,000 needed for the cardiac catheterization. Her family donated nearly $7,000, a PDHeart List member from Michigan sent $1,000 and a member from Australia sent $70 after she saw the posting on the Internet, Booth said. The Dengs made up the difference.

UCLA doctors believe there is a chance heart surgery will work, but say Shao-han will first need a lung operation to alleviate a related lung pressure problem.

Fund Set Up

The Chinese Christian Herald Crusades, a New York-based nonprofit organization with offices in Alhambra, has set up a fund to raise the bulk of the needed money and will feature the Dengs in its next monthly newsletter that reaches 200,000 Chinese living abroad.

Deng said his family is overwhelmed by the support but is trying not to look too far ahead.

“We live one step by step,” he said.

If the boy survives, he will have to remain in the U.S. for at least two years for surgeries and monitoring.

Deng said his son, whom he calls Shao-Shao, meaning laughter, is happy and outgoing. Recently he saw an ocean for the first time. “He was very excited when he saw the ocean, but he was afraid of the waves,” Deng said, laughing.

He said he worries that he and his wife, who speaks no English, may have to leave their son with a local family and go back to China to raise funds.

Deng, who was studying at the University of Western Australia, said his next goal is to obtain a work permit and find a job so he does not abuse the generosity of his hosts.

“We are confident of American people,” he said. “They are very kind and nice.”

Tzeng and his family decided to help out because his faith required it, said Deng, translating for Tzeng, who is not fluent in English.

After receiving so much help from a number of Christian families, Deng said he has decided his family will convert to Christianity as well.

“We are reading the Bible now and learning to pray for my son,” Deng said.

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Correspondent Regina Hong contributed to this story.