11/27/2005
The Neediest Cases; Queens Family Struggles as Illness Drains Resources
By LILY KOPPEL

"You're looking at your life like you're a firefighter," said Han Chen, wiping tears from behind her glasses and explaining her refusal to abandon her daughter Mengting, 12. The girl was born in China with a rare and severe neurological disorder that renders her unable to speak, hold up her head, swallow or function normally.

"Everybody advised me, give up Mengting, get another, new child," said Ms. Chen, 36, describing how in China, with its one-child policy, the abandonment of disabled children is accepted. "Even my grandma told me to. She said: 'Think about it. You're going to America. It's a new country for you. You need to start from the beginning. How can you take your child?' "

But the sense that she is putting out one fire after another isn't the only feeling Ms. Chen has in common with firefighters. Like them, she doesn't like leaving anyone behind.

Ms. Chen made the decision to save her daughter while her husband from an arranged marriage, Jie Lu, a Chinese-born American citizen, worked 80-hour weeks in the kitchen of a Chinese restaurant in New Jersey.

By 1995, when the girl was 2, he had saved enough money to bring Ms. Chen and Mengting to New York. There, a search began, for doctors and for a diagnosis of their child's condition.

An almost fatal setback occurred while they were still adjusting to their new landscape. In 1997, a month after the birth of Ms. Chen's second child, Sudong, Mengting caught pneumonia and was hospitalized 10 times in six months. Ms. Chen spent every day at the hospital with Mengting, whose weight dropped to 25 pounds from 37. Nights, Ms. Chen stayed up worrying, while nursing her infant son and preparing bottles of milk for the next day.

"I only know that she is breathing," Ms. Chen said of her sick daughter, whom she later cared for in the single room in Chinatown where the family was then living. She treated her constant fever, changed diapers, washed bedsheets and fed her daughter a rice porridge.

In the first two years after the fight with pneumonia, Mengting gained only one pound. "It's very hard," Ms. Chen recalled, "but we see her face start to change little by little."

Another sign of progress for the family around that time was a diagnosis for Mengting, and a long-awaited understanding of what she was going through. Mengting, her parents learned, was suffering from aromatic L-amino acid decarboxylase deficiency. "She has problems carrying the message," Ms. Chen said, explaining her daughter's inability to produce certain proteins and the neurotransmitter dopamine.

There is no hope for a cure. But medication, along with her family's devotion, makes Mengting more comfortable. "We like to listen to music with her, sing songs, just simple things," Ms. Chen said.

Ms. Chen, who had completed two years of college in China, worked as a bank receptionist in New York for three years before being laid off. After graduating in May from a training program at Grace Institute, she found a job as an administrative assistant to social workers at the Education Alliance in Chinatown. The institute is affiliated with Catholic Charities of the Archdiocese of New York, one of seven charities supported by The New York Times Neediest Cases Fund. Recently, the charity tapped the fund to provide $275 for the family, which lives in public housing in Flushing, Queens.

With the parents struggling to meet their disabled child's expenses, which include medicines, intravenous nourishment, and a room furnished as a makeshift hospital, the small sum had a big effect. It was used to buy new bedding, pajamas and a heavy coat for Mengting, who is largely homebound but enjoys trips to the playground in her wheelchair.

Meanwhile, Ms. Chen's new job is another help. After a nurse arrives each morning, she travels by subway with her younger daughter, Huilan, 3, who attends a nearby Head Start program. "I want to give my children better opportunities," Ms. Chen said. "I say, 'Mommy's not a superman.' In Chinese they say, 'Three heads, six arms.' I wish I had."

As Mengting has gotten older, her problems have continued to worsen. She has developed scoliosis, or curvature of the spine, which threatens her internal organs and will require a major operation. Among her many other needs is a new shower chair. The parents invest everything they can, several hundred dollars a month, even traveling to China to try herbal treatments and acupuncture.

"Meng in Chinese is like 'dreaming,' and Ting is like 'stand very beautifully,' like a dancer. So, very bad, the name we give her," said Ms. Chen, saying some friends interpret Mengting's name as meaning she is frozen in place and have told Ms. Chen to alter the way the name is written in Chinese, in hope of improving Mengting's health. "Very difficult to say if you believe or not, you just try to do something good for her."

During an interview in September, Mengting watched Barney on television before bedtime, when the fun gave way to reality all too quickly. In the evening there is medication to take. Then, as Mengting settles down in a secondhand hospital bed, Ms. Chen monitors her breathing through the night.

"One time my son say, 'Mengting is like Snow White,' " said Ms. Chen, stroking her daughter's braids. Mengting smiled, and laughed. "She understands sound," Ms. Chen continued, "and sometimes maybe she understands a little more than we think."

HOW TO HELP

Checks payable to The New York Times Neediest Cases Fund should be sent to 4 Chase Metrotech Center, 7th Floor East, Lockbox 5193, Brooklyn, N.Y. 11245, or any of these organizations:

BROOKLYN BUREAU OF COMMUNITY SERVICE
285 Schermerhorn Street
Brooklyn, N.Y. 11217

CATHOLIC CHARITIES, DIOCESE OF BROOKLYN AND QUEENS
191 Joralemon Street
Brooklyn, N.Y. 11201

CATHOLIC CHARITIES OF THE ARCHDIOCESE OF NEW YORK
1011 First Avenue
New York, N.Y. 10022

CHILDREN'S AID SOCIETY
105 East 22nd Street
New York, N.Y. 10010

COMMUNITY SERVICE SOCIETY OF NEW YORK
105 East 22nd Street
New York, N.Y. 10010

FEDERATION OF PROTESTANT WELFARE AGENCIES
281 Park Avenue South
New York, N.Y. 10010

UJA-FEDERATION OF NEW YORK
Church Street Station
P.O. Box 4100
New York, N.Y. 10261-4100

No agents or solicitors are authorized to seek contributions for The New York Times Neediest Cases Fund.

Donations may be made with a credit card by phone at (800) 381-0075 or online, courtesy of NYCharities.org, an Internet donations service, at www.nytimes.com/neediest or www.nycharities.org/neediest. For instructions on how to donate stock to the fund, call (212) 556-1137 or fax (212) 556-4450.

The Times pays the fund's expenses, so all contributions go directly to the charities, which use them to provide services and cash assistance to the poor.

Contributions to the fund are deductible on federal, state and city income taxes to the extent permitted by law.

To delay may mean to forget.