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September 1, 1999


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The Face of Courage

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Dozen Surgeries Behind Her and Over 30 to Come, But 7-Year-Old Gudiya Is Determined To Be a Normal Woman

Sonia Chopra

Sukhmani Singh loves Barney, Arthur and dressing up in front of the mirror. When her mother isn't looking, the seven-year-old grabs her lipstick and rouge and tries to apply it.

She laughs mischievously as her mother chases her around the room in their tiny New York home to retrieve the make-up. Sukhmani is behaving like many children of her age.

But Sukhmani is different. She was born in India with craniofacial abnormalities, which in simple terms is holes and defects that go from her mouth to the eye sockets. She was born without a single bone on one side of her face and as an infant there was a gaping hole in her forehead. The cleft lip and the palate are among the best known of these deformities.

A determined doctor in New York has moved her right eye socket and has formed a bridge for her nose. He will soon work on the mouth and next year, she will have ears, where there are only bits of tissues.

"Still, she has self esteem and no complexes. She knows she is different but we have always told her that she will soon be fine," said her mother Meenakshi Singh, 31. "Sukhmani loves to play with other children, wants to be friends with them and she is a happy, cheerful child."

"She is our gift from God. When I first saw her, I knew this was my project in life, to give this child, her right," said Gurnam Singh, 35, who used to be a tool and dye engineer in India and had a successful tyre business, both of which he abandoned to collect money for her daughter's operations and migrate to the United States in December 1995.

The Singhs, who live in a small basement apartment in Richmond Hills, faced opposition from family and relatives because they wanted to bring what their families called a "deformed daughter" to a foreign country.

"My mother could not understand our attachment for our child. She was angry I went to the hospital. I had the feeling that if I didn't go to visit her, she would have had her given away," said Gurnam Singh, who is deeply religious.

Without the support of their relatives, the Singhs collected approximately $ 100,000 from donations sent as a result of advertising on television and newspapers because they were told by their doctor that any hope for a normal face lay in the United States.

"We were told that what can be accomplished in ten operations in India, can be achieved in one operation here," Gurnam said.

By now, Sukhmani, whom her parents call "Gudiya," has had a dozen major operations, and will have an estimated 30 more, over a period of eight to ten years.

"We have had a huge struggle with Sukhmani, who is a bright and dynamic little girl," said Dr Joseph G McCarthy, director of the Institute of Reconstructive Surgery at the New York University Medical Center.

"On a scale of one to five, she's a five," said Dr McCarthy, who is working on Sukhmani pro bono, and who cautions that "although they will continue to work on her appearance, she will be near normal."

Completely oblivious to staring eyes, Sukhmani dances around people who look at her with horror and disgust, sometimes. "It hurts me when people stare. I have got used to it by now but I want them to know that it is not her fault if she was born like that," said Meenakshi, who is so touched by the warmth of the doctors and nurses here, that she wants to be a nurse too.

And for Meenakshi, who was only allowed to see her newborn ten days after she was born, it was love at first sight when her infant tugged at her little finger and her heartstrings.

"The doctors thought it might be a shock for a new mother," said her husband. "But she was so cute and so sweet, that we loved her at once."

The doctors could not figure out how to deal with the infant's basic needs but the parents never gave up.

"She couldn't be breast-fed nor could she drink from a bottle. So the doctors fed her through a tube. But one day I noticed she was sucking her fingers. So we tried to feed her with a bottle. It was only after she drained the bottle that the doctors believed us and discharged her,’’ Meenakshi said.

Gurnam was frustrated at both the ignorance of the doctors and the fears of the community back home. "The doctors didn't expect her to live. They came to my wife's bedside with sad faces. One of my relatives refused to send his pregnant wife to our house because they were afraid she might have the same kind of face," he said.

The older people in the community even blamed the heavens for the little girl's face. "They said my wife saw the eclipse, that's why this happened," Gurnam said.

When the Singhs came here, the Indian government paid their plane fare and they stayed at the Richmond Hill gurdwara.

"People used to stare at her. They would get frightened. Other children would scream when Gudiya would run up to them. They told us we were a distraction. We got the feeling we were unwelcome," said Gurnam, who then rented a $ 650 basement apartment, one block away from the gurdwara.

Under Immigration and Naturalization laws, they are granted a special visa annually. But that makes it difficult to get high level jobs, because "employers don’t want to hire someone with a one-year visa," the father said.

But he is the first to admit that all that pales in comparison with Sukhmani's load. "She had her first operation at five months. She had anesthesia, medication and has had to fight off infection. She has nerve bruises, sometimes parts of her body get swollen," he said.

The Singhs are also pained by the fact that they were not allowed to bring their son Amrit Pal, 5, to the US. He lives with his grandmother.

"I can't tell you how hard that is for a mother. My heart is with him all the time. We miss him every minute. Sukhmani keeps asking for her brother as well," said Meenakshi sadly.

"He is losing out. He is suffering emotionally, academically and physically. He is neglected. It is hard for a 70-year-old woman to take care of an active child," said Gurnam, adding that the family makes annual visits to see him.

Michael DiRaimondo, an immigration lawyer who is working on the Singhs's case, is optimistic on the chances of the INS granting Amrit Pal a visa on "compassionate grounds."

"So far, the INS has gone out of their way to help out. They are sympathetic to the family's burden and handicap. Our hearts just went out to the family and we know they deserves all the help they can get," said DiRaimondo, who heads a small firm and rarely takes pro bono cases.

School authorities have also been helpful. Sukhmani goes to special education classes in Ozone Park. "It's good for her. She has gained a lot of confidence," said Meenakshi of the second grader, who has 11 other classmates.

Sukhmani dreams of swimming, skating, taking ballet classes and riding a bike one day, her parents say, all things she is unable to do now because of her extensive surgeries.

Inspired by the Singhs's determination to make their daughter's life as normal as possible, a close family friend, Raj Arora, 34, who also lives in Richmond Hill now spends all his free time helping out the Singhs by being their spokesperson and assisting in everything he can.

"I am very worried about the child's health, living in a basement apartment. After all the operations when she needs to recuperate, she should be in a better place," said Arora, who added that the family needs many things but doesn't know where to turn.

The Singhs dismiss any discussion of courage or bravery. "God had sent us this assignment. All we want is that our child should be able to stand on her own feet."

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