Born without arms and legs, refugee finds new life in U.S.

To write with a pencil or eat a cup of ice cream, Bukuru Nyandwi tilts his head and balances the item between his chin and shoulder.

Born without arms or legs, he has learned ways to compensate. Writing takes longer, but he manages the curves and lines to make letters.

"I'm good the way I am," said Bukuru, a 16-year-old who emigrated from the African country of Burundi. He came with his family to the United States last year.

"I am happy the way I am. It's the way I was born. I have to be happy. My brother helps me. I can walk around the house by myself," he says, speaking through an interpreter.

Eating the ice cream is trickier. With his chin, he tilts the small single-serving cup toward his mouth, then licks. It works, until there is almost nothing left and the cup is harder to balance. Then the cup falls, speckling his wheelchair arm with ice cream.

In April, Bukuru was contemplating surgery that would have allowed him to be fitted with prostheses -- mechanical attachments to his upper arms. He also was to be fitted with leg prosthetics to make him look more normal but not let him walk. For getting around, therapists at Children's Hospital recommended a motorized wheelchair. At home, he gets around by scooting along the floor, twisting his torso right and left. Away from home, he is pushed in a wheelchair and sometimes carried.

"I wish they could do both hands. They will do the right hand first," said Bukuru, about three weeks before he was to have surgery. "I write with my right hand."

The hands he refers to are not really hands but pointy stumps where there should be arms. They would be lengthened and reshaped or rounded by surgeons to give the prostheses better grip.

A month later, however, Bukuru had called off the surgery.

His decision might strike some as odd -- with the surgery and prostheses, he could do more things for himself.

But for a young man who has lived all his life with his physical difference, and whose friends and family accept him and help him, it was not a difficult decision.

"I take him the way God gave him to me," said Bukuru's mother, Cecelia Ntamiwishimiro, a widow who lives in a town house apartment in South Richmond with Bukuru, her three daughters, a grandson, and Bukuru's twin brother, Toyi, who was born normal. There is little medical information on what causes such a birth defect or why Bukuru's twin did not have a similar defect. Bukuru's medical records refer to the condition as congenital transverse amputation of all four limbs. Other researchers use the term deficiency instead of amputation to better describe the missing limbs. Studies suggest various factors might contribute to the defects -- with genes and environmental exposures high on the list.

"God, he give him to me the way you have to love him," Ntamiwishimiro said.

That is the sentiment, as well, of Bukuru's friends who attend an English-language class with him at Crestwood Presbyterian Church in South Richmond.

"We are Christian. If God made him like that, leave him like that," said Dorcine Nzikwinkunda, answering before Bukuru when asked why he no longer wanted the surgery. "We are going to help him with everything."

Bukuru, who waited for Charlotte Niyonzima, 13, to translate for him, confirmed it was what he wanted. "I decided," he said.

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Bukuru's journey to the United States began more than 7,000 miles away, in central Africa. His mother was among the thousands of people who fled Burundi, a nation slightly smaller than Maryland with a population of about 9 million, to escape civil unrest and ethnic killings. They became refugees, living in resettlement camps in neighboring countries, including Tanzania.

"They are known as the 1972 Burundians because that was the year the unrest caused this group to have to flee and go to refugee camps," said Carol S. McElhinney, Richmond regional director for Refugee and Immigration Services.

Though many of those who fled Burundi have returned now that things have become less dangerous, Ntamiwishimiro and her family, presented with the opportunity, resettled in the United States.

In 2006, the United States agreed to resettle 13,000 of the 1972 Burundians and their descendants, according to a United Nations refugee agency. To be eligible to come to the U.S., they had to have been displaced more than once and to have spent practically all their lives in exile.

McElhinney's agency, a division of the Catholic Diocese of Richmond, has helped Ntamiwishimiro's family and about a dozen other families from Burundi settle in Richmond. The agency offers the families intensive case-management help for the first 180 days, with the level of care declining as families are better able to navigate life in the U.S. on their own.

"It's good to be here, except I have some problems: sickness," said Ntamiwishimiro, speaking through an interpreter. She complains of medical problems but also is worried about repaying the loans for the air travel to the U.S. The U.S. lends the money to refugees to get here, and they are expected to pay it back.

For Bukuru's family that amount is about $2,500. Billing starts within three to six months of arrival, and families can get deferrals though they are never totally off the hook, said McElhinney. A repayment deal has been worked out to reduce Bukuru's family's bill to $50 per month, but that kicks in only after $1,000 already overdue is paid, officials at McElhinney's agency confirmed.

"I want somebody to help my mom," Bukuru said. "We worry about the travel bills. It's a lot for my mom."

On many other fronts, life in the U.S. is different but in a good way, Bukuru said. He stays busy. He goes to Huguenot High School and attends services and English as a Second Language classes at Crestwood Presbyterian Church.

"I can't imagine the obstacles he has overcome and has got to overcome," said Ellen Cross, a volunteer English-language teacher at Crestwood. She recalled one of the medical evaluation meetings when the surgery was still being discussed.

"They asked him what kind of job he would like to do," Cross said. "They said he just paused for a long time and answered, 'I never thought I could do a job.'"

The teen language classes at the church, as the weather has warmed, have become more of a social hour. The boys, joined by neighborhood kids, play basketball using a goal set up on the parking lot. The girls play dodge ball, then practice dance steps.

Bukuru watched the game from the sidelines, not saying much, even when the ball was dribbled perilously close to him.

Prosthetic arms would not change the fact that he often sits by as others move about. Or that he has to wait for others to do things for him. The cup of ice cream was brought to him, opened and placed on his shoulder. As the group of teens, including his brother, congregated in a larger room of the church where cake and ice cream were being served, he stayed behind, alone for a minute or two, until asked if he wanted to join the others.

Earlier, when the surgery was planned, he talked of what he wanted to do, including, maybe, going to university.

"It's a lot of things I want to do, I can't do," Bukuru said, again speaking through an interpreter. "I want to take a shower by myself, feed myself. I want to go on the school bus. I want to be like a normal child."

With or without surgery and prosthetic arms, there are tools that would allow him to do more for himself.

"One of the things for mealtime is a long flexible straw," said occupational therapist Katie Bobbitt at Children's Hospital, who evaluated Bukuru before the surgery was being considered. "He can't pick up a cup. With the straw, he does not have to bite [the cup] with his teeth and bend it back." Other recommended items include a nonskid bowl, eating utensils attached to a padded arm cuff that can fit around his stumps, plus items for bathing.

. . .

It is not unusual to have someone who is born disabled to not really be concerned about how to enhance his quality of life, said Allen Lewis, an associate professor and chairman of the Rehabilitation Counseling Department at Virginia Commonwealth University.

"As they see it, their quality of life is fine. They don't know different," Lewis said.

"Culture makes all the difference when you talk about disability. Disability is one of those phenomenon that is culturally embedded, so the context one lives in determines whether or not disability even exists, and if it does, what the rules and values are about that."

Where he lives now, Bukuru scoots from room to room on a hard, tiled floor. His pants are cut and folded below his torso.

One thing that would be nice to have, he said, is carpet. The people in the room laughed.

Lewis said as people become more aware of other options, they sometimes change what they think they want. Toyi said his brother wants some independence.

"Sometimes when I feed him, he wants to feed himself," Toyi said. "Sometimes he feels he is the man in the house."

A new motorized wheelchair would allow Bukuru to lower himself to the floor unaided. Now, he is lifted in and out of a wheelchair that needs someone to push it.

Back in Tanzania, life in the refugee camps came with limits.

Getting to school required an hourlong walk one way. Bukuru got there -- pushed in his wheelchair by Toyi. Here, he takes the bus.

"After school, I came back home. My mom would be home, cooking for me, and my brother would be there to help me. It was a lot of people around me who could help me," Bukuru said.

Here in the U.S., Bukuru has a "wealth of options," said Cameron Carter, an intern with Refugee and Immigration Services who worked with Bukuru.

"His is truly a survivor in multiple senses of the word," Carter said. Surgery or not, "the story of him, his strengths, and positive outlook on life is the same."

Bukuru is not an attention seeker, and almost seems embarrassed sometimes by attention.

"Yes, I miss home, but it's good to be here in America," he said simply.

Contact Tammie Smith at (804) 649-6572 or .