The 20-inch pink and white bicycle is stowed in the basement, the new school clothes are still in the closet. Anitras (Nee Nee) White's things have been put away since she died one year ago today.

Eight-year-old Nee Nee White died of complications from sickle-cell anemia, a hereditary, sometimes fatal, blood disorder that affects persons of African, Mediterranean and Middle Eastern descent.

Approximately 50,000 black Americans have the disease and 2 million are carriers of the genetic trait for sickle-cell anemia. Those who carry the trait are not sick, but they can pass on the gene to their children. If both parents carry the trait, there is a 25 percent chance with each pregnancy that the child will have the disease.

The disease is caused by the presence of abnormal hemoglobin, or red blood cells. Instead of healthy round cells, the diseased blood cells are curved, similar to a banana. These cells tend to stick together, causing logjams in the circulatory system and preventing adequate oxygen from reaching vital organs.

When a sickling episode or "crisis" occurs, the limited blood flow causes severe pain primarily in the arms, legs, stomach and back. It was this kind of pain that often sent little Nee Nee White to her bed, screaming in agony.

She lived in a small, neat row house in Southeast off Benning Road with her parents, Kathy and Fred, both 26, and her little brother, Fred III, usually called "Third." But Nee Nee spent 75 percent of her young life in the hospital, away from the little house decorated in bright, cool shades of green. She was usually treated at Howard University Hospital, one of 10 specialized sickle-cell treatment centers in the country.

Nee Nee, born on Father's Day in 1974, was a healthy baby until, when she was 18 months old, the sickle-cell anemia was discovered during a routine checkup.

"It seems as soon as we found out she had it, she started having problems," recalls her father, Fred White, who quit his job recently as a Library of Congress payroll technician to pursue an accounting degree at Howard University. At first the little girl's disease did not appear too serious, but each year the periods of illness became more painful and frequent.

She seemed fine when she went off to her second grade class at Merritt Elementary (the same school her father once attended) one year ago, but she suddenly became ill that evening. In the wee hours of the morning, her father wrapped her in a blanket, ready to rush her to the hospital, but it was too late.

Because of their daughter's long illness, Kathy and Fred White are nearly experts on sickle-cell anemia, and this month, during National Sickle Cell Month, they will be interviewed on various local and national televison programs.

"I think we will help people understand more," said Fred White, who is continually surprised that so few black people he has talked to know anything about the disease.

"It's always a misfortune that gets people to wake up," he said. The Whites hope that, after hearing their story, "some people will think to get their child checked out."

This year marks the 10th anniversary of of the National Sickle Cell Program, initiated by President Nixon and funded through what is now the Department of Health and Human Resources. Specialists in the field agree that more has been learned about sickle-cell disease in the past 10 years than has been known about the disease since its discovery in 1917. "While the advances have not led to a cure, the management of these patients has been greatly enhanced," says Dr. Clarice Reid, director of the Sickle Cell branch of the National Heart, Lung and Blood Institute.

Nee Nee White and her family have been among those to benefit from those recent discoveries. Nee Nee first became seriously ill in 1977, when the family was living in Kansas while Fred was in the Air Force. Sickle-Cell Disease: Nee Nee White's Struggle By SANDRA R. GREGG Washington Post Staff Writer

The 20-inch pink and white bicycle is stowed in the basement, the new school clothes are still in the closet. Anitras (Nee Nee) White's things have been put away since she died one year ago today.

Eight-year-old Nee Nee White died of complications from sickle-cell anemia, a hereditary, sometimes fatal, blood disorder that affects persons of African, Mediterranean and Middle Eastern descent.

Approximately 50,000 black Americans have the disease and 2 million are carriers of the genetic trait for sickle-cell anemia. Those who carry the trait are not sick, but they can pass on the gene to their children. If both parents carry the trait, there is a 25 percent chance with each pregnancy that the child will have the disease.

The disease is caused by the presence of abnormal hem space," she said.

Her main purpose, Sewell said, "is to uplift the importance of extended family as a concept and bring it back into a positive role. As a society, we have moved from a family orientation to a me orientation."

Among American Indians, Jews and black Americans, grandparents and elder relatives traditionally have been more influential and held in higher esteem than in other groups, said psychiatrist Eliot Sorel, the foundation's director of family studies. Each of these groups had "the similar experience of a generation that was decimated by political, economic or racist forces," he said.

Parents in these Her parents, both native Washingtonians, took her to several hospitals, but the doctors weren't sure what the problem was.

Then, "They just didn't know," said Kathy White. But now, she says, most doctors know to ask about a possible family history of sickle cell when they treat a sick black child. A simple blood test can determine if a person has the disease or carries the trait.

When the Whites found out that Nee Nee had sickle-cell anemia, the words struck a familiar chord with Fred, whose mother has the disease. Kathy knew a little about it because she also has had painful bouts with a less serious form of sickle-cell disease.

But neither of them knew just how serious it could be. Nee Nee's brother has the same type of sickle-cell disease as his mother, but so far, the 4-year-old has shown no signs of illness.

Children who have the severe variety of the sickle-cell anemia are extremely susceptible to colds and infections and require frequent blood transfusions. They tend to be pale and jaundiced and often have swelling in their limbs and internal organs, and their bodies don't develop as well as those of healthy children.

When the whites of Nee Nee's eyes turned yellow, her parents knew a sickling crisis was on the way. "We'd push the palm of her hand and, if it didn't turn red, we knew we'd be going to the hospital soon," her father said. Nee Nee knew her own symptoms, too, and would promise to drink lots of fluids so she wouldn't have to go to the hospital. Drinking fluids when a sickling crisis begins helps prevent the blood from getting thick and causing the painful symptoms.

"She learned to deal with it very well," Fred White said, but the headaches and the still joints sometimes were too much for the little girl. She would scream and bite her pillow, her parents recall. "I couldn't take it, I would have to leave the house," her father said.

But when Nee Nee was feeling well, she was an active, happy child. Though she was usually quiet, she turned into a real ham around anyone with a camera. "She was the first grandchild on both sides of the family. She had a lot of responsibility thrust on her," says Fred.

Though she was very young, she was the marshal over her younger cousins. "She was a lady -- 7 going on 35 or 40," her mother said. Nee Nee was particularly close to one of her cousins and to her grandmother, both of whom also have sickle-cell anemia.

Fred looked at his own hands and painfully recalled how Nee Nee was always the first to volunteer to rub Ben Gay on her grandmother's legs during a crisis.

"That little girl had a long, stormy course," Dr. Roland Scott said of Nee Nee. Scott, director of the Howard University Center for Sickle Cell Disease, said Nee Nee's death was probably caused by repeated infections that her body could no longer fight off.

Slowly, Scott says, doctors are learning how to prevent some, but not all, of those infections.

In the past decade, he explained, researchers have learned that sickle cell "is a family of diseases," varying in symptoms and severity. Because they have learned much about the molecular stucture of the sickled red blood cells, doctors can now diagnose sickle-cell disease before a baby is born, through amniocentesis, or immediately afterward, through a simple test of blood from the umbilical cord.

There are several studies under way ways of how to treat the blood of sickle-cell disease patients with chemicals that will help the abnormal cells hold their proper shape longer and thereby reduce the frequency and severity of pain crises.

"All of these things mean you can treat and counsel people better," says Scott. But he is worried that public and government interest in sickle cell is waning. Several years ago there were 15, not 10, national sickle-cell centers. And in 1975, Congress incorporated the sickle-cell act into a genetics bill forcing sickle-cell projects to compete with numerous other hereditary diseases for funding.

Reid says that funding for the national program has been constant at about $19 million annually for several years, but she said that, considering the toll of inflation during the same years, funding has actually decreased significantly. The Reagan administration budget has reduced the amount of reasearch dollars for all NIH projects, and sickle-cell sreening and counseling services will become part of each state's health block grants.

But the politics of sickle cell seem somewhat removed from the Whites right now. The uppermost thing in their minds is that they would like to have another child, but can't. Kathy Whitewas sterilized after her second child was born because they were afraid to risk having another sick child. "I just couldn't go through that anymore -- seeing my daughter go through all that pain," Kathy explained.

At the time of the sterilization, neither Fred nor Kathy thought they would lose one of their children. "That's what hurts so much -- everyone makes dreams for their children," Fred said. "I guess it was just God's will."