Some have been abandoned by parents unable to cope with their disease. Others have been rejected by friends, schools, even Bible classes. And like their adult counterparts, for children and infants with AIDS, there is no cure.
Most undergo a grim treatment that is medicine's best hope of delaying the breakdown of their immune systems. Each month they receive three-hour intravenous injections of gamma globulin, a sterile solution that contains thousands of pooled antibodies, to fortify their blood.
It is an effort to win against overwhelming odds: the majority of children born with AIDS die within three years.
"This only delays the infections," Dr. Ayre Rubenstein, an immunologist at Albert Einstein Medical College of Medicine in New York, says of the gamma globulin treatments. "It isn't a barrier for the cancers that come."
Some 600 people under 18 in the United States have AIDS or AIDS-related complex (ARC), a condition that sometimes leads to AIDS, Rubenstein says. As of Aug. 26, federal health monitors count only 183 cases of AIDS in children, since the government tallies only those whose disease has advanced to a life-threatening stage. New cases are being uncovered at such a rapid rate that the government expects the number of children infected to double in the next year.
As of Aug. 20, when there were 155 children with AIDS, the majority -- 109 -- were born with AIDS because their mothers acquired the disease, most often through use of intraveneous drugs or having had a sexual partner who carried the virus. In one case an infant was born with AIDS because his father, a hemophiliac, unknowingly acquired AIDS through contaminated clotting factor and passed the disease to his wife. The federal Centers for Disease Control also reports one case in Australia in which an infant apparently acquired the virus through breast milk.
Another 23 infants, most of them born prematurely, were infected with AIDS through blood transfusions that were later found to contain contaminated blood. A test that allows blood to be screened for the presence of antibodies to AIDS became available in March, but the disease can lie dormant for up to five years.
"We expect to find cases until 1990," says Dr. James Oleske, a Newark pediatrician with four dozen young AIDS patients. Martha Rogers, a pediatric AIDS expert at CDC, notes: "There's a lot of infected blood already transfused, and we have to wait for incubation periods now." Some pediatricians suggest that patients who have had blood transfusions in the past few years have their blood tested for AIDS antibodies.
At least six local children have gotten AIDS from contaminated blood, the Washington Region of the American Red Cross Blood Services acknowledges. They include Jason Oliver, of Warrenton, who died in February 1984 at 15 months of age, and Matthew Kozup, of Herndon, who has been sick and hospitalized much of his 2 1/2 years of life. Neither the Red Cross nor the local hospitals where the infants were infected will discuss the cases or the current health of the other infants.
At least three Baltimore-area infants have contracted AIDS, including a 1-year-old girl who died in June.
The other children whose cases are counted by the federal government include 15 who developed the disease despite no known risk and eight hemophiliacs, who received contaminated clotting factor.
Children with this frightening disease face unique problems, Stephen and Sue Kozup have discovered. The Fairfax County Board of Education denied their son admission to a special education program for fear he would transmit the illness to others. Health experts are recommending that children with AIDS be isolated until they and their peers are old enough to know not to share food or other saliva-coated items.
The Kozups are trying, so far without success, to get the county to pay for physical and speech therapy that he would have received in the special ed program. Matthew now is at home "eating like a horse, but he doesn't absorb it," his mother says.
Immunologist Rubenstein has studied 60 families of children with AIDS and has found no cases where the disease was transmitted -- despite kissing, sharing of utensils and food, and touching the child's body wastes. Still, parents are urged to take precautions. The Kozups buy disposable rubber gloves by the box and must discipline their 3 1/2-year-old daughter if she tries to play with any of Matthew's toys.
"It's very hard because you can't hug and kiss your child as much as you want to," said Sue Kozup, who often sings to Matthew. "He gets distant, in his own little world."
Because so many people overreact to the fears of AIDS, many parents and foster parents of children with AIDS keep the illness a secret. While secrecy may spare the children unwarranted rejection, the lack of isolation exposes the children to childhood diseases like chicken pox that present a danger to them, doctors say.
The CDC issued a set of guidelines last week on how schools should handle children with AIDS. It notes that casual contact among schoolchildren appears to pose no risk of transmission, but says there are few studies of contact among younger children and handicapped children who may lack control of their body secretions.
It recommends that the decision about placement be made by a team made up of the child's doctor, parents, director of the school or care center, and public health staff. The federal agency also recommends that adoption and foster-care agencies begin screening children who are at risk of infection before they are placed, but stated that mandatory screening as a condition of entry to school is not warranted.
Several states, including New Jersey, Florida and Connecticut, have written their own guidelines. They state that most children with AIDS can be kept in regular classrooms, as long as they are toilet-trained, don't bite others or have no open sores. They ask that the child's teacher, principal and school nurse be notified of the child's condition. One New York City school district has barred students with AIDS and those suspected of having the disease.
Rogers, of the CDC, says parents should remind all children not to share food, drinks or chewing gum as a basic precaution against the transmission of all infectious diseases.
But little the experts can do or advise helps families cope with the emotional and financial drains that a child with AIDS presents.
"We're really going through this alone, because our families have never accepted it," said Sue Kozup. "Our neighbors have been fine because Matthew isn't down on the ground playing with the other kids." Their son, who also has cerebral palsy, spends most of his time in an infant seat. "I shoo away the neighbor kids who get close."
In June, several members of a local Lutheran church threatened to quit if the Kozups' daughter, who is healthy, was allowed to attend a week-long Bible school. "You talk about Christianity and expect people to be loving and open-hearted," said Sue Kozup. "That kind of hurt."
After a special meeting where Steve Kozup and their son's doctor explained there is no risk of acquiring AIDS from the girl, she was allowed to attend. But on the fourth day, the Kozups were asked not to send her for the last day because the girl was upset.
The biggest step forward for the Kozups is a bittersweet achievement. After months of trying to convince the federal government that their son should be counted as an AIDS victim, the CDC agreed its definition of AIDS left out many children, whose symptoms vary from those of adults.
"He now meets the new criteria," says Sue Kozup, who said her son had to undergo a lung biopsy to prove he suffers from interstitial pneumonia. That ailment, plus a high reading on the AIDS antibody blood test, is now proof a child has AIDS, according to the federal definition.
"It's weird to be happy that your child is now an official AIDS victim," she said. "But it's so important because there are a lot of little Matthews out there, sick but not really counted.
"The rest of the world needs to know just how big a problem this is."