Aids: Fatal, Incurable and Spreading
updated 06/17/1985 AT 01:00 AM EDT
•originally published 06/17/1985 AT 01:00 AM EDT
When they got married in 1983 things seemed promising for Patrick and Lauren Burk. They were working together at a facility for the mentally retarded near their home in Cresson, Pa.—Lauren, 24, as a nurse and Patrick, 27, as an aide. Together they made about $30,000 a year, enough to support themselves comfortably—and toddler Nicole McCabe, Lauren's daughter by a previous marriage. In April 1984, when their son, Dwight, was born, Patrick was overjoyed. A hemophiliac, he had hoped for a son, knowing that a female child can carry that hereditary blood-clotting defect to another generation, while a male child cannot. With the birth of his son, Patrick thought his worries were over.
He was wrong. For the Burk family, a nightmare was about to begin. Last July, during a family vacation in Virginia, Dwight—who had been sickly with nagging ear and throat infections and chronic diarrhea—suffered heart and respiratory failure and was rushed to a Richmond hospital. Five weeks later at Children's Hospital of Pittsburgh, doctors made a horrifying diagnosis: The 4½-month-old infant had AIDS, the lethal disease that destroys the body's ability to fight off infection.
After Dwight was diagnosed, his parents were tested for the disease. Both were found to have ARC (AIDS related complex), a condition often described as pre-AIDS and characterized by fatigue, diarrhea, swollen glands and other symptoms common to AIDS. Doctors believe that Patrick, like many hemophiliacs, contracted the AIDS virus from a blood-clotting product that he uses regularly. He then passed the virus to Lauren through sexual contact, and she passed it to Dwight, either while she was pregnant or, after he was born, through mother's milk. (Daughter Nicole, now 4, is safe from the disease.) Obviously the diagnoses were devastating, but the Burks carry on. "We try to put it out of our minds that there's anything wrong," said Lauren. "But it's something you have to think about. We've thought about where we want to be buried. I mean, this is a 24-year-old and a 27-year-old sitting down, saying, 'Where do you want to get buried? Who do you want to say the Mass? What do you want to wear? Who's going to get what?' "
For a few months the Burks tended to Dwight as best they could and prayed that, like the majority of ARC carriers, they would never actually come down with AIDS itself. But in December Patrick contracted Pneumocystis carinii, a form of pneumonia that is rare except in AIDS victims. Two weeks before Christmas he learned that he too had AIDS.
Soon both Dwight and Patrick were suffering from many of the debilitating symptoms that plague AIDS victims. Dwight was pale and listless and suffered from near constant diarrhea. "He doesn't sit, crawl, stand or do the normal things a 13-month-old will do," Lauren said in May. "He's not real playful, and he's tired all the time. But he smiles and plays with toys and is real lovable. Some kids get antsy, but he'll just sit for hours and hours on my lap."
Patrick also suffers from chronic diarrhea, and his weight has dropped from 190 to 155 pounds. His liver, spleen and lymph glands are swollen, and he feels constantly fatigued. In February he returned to work, but within two weeks a sinus infection put him back in the hospital. Nevertheless he remains optimistic. "I still believe I'll be the first AIDS victim to survive," he says. "I honestly believe we'll hang around until there's a cure, and we won't have to worry anymore."
In December Lauren took a leave of absence from her nursing job so that she could take care of Patrick and Dwight. In the spring, desperate for money and medical benefits, she asked to return part-time. That request sparked a controversy when some of her colleagues, fearful of contracting the disease, started a petition against her return. "They said they don't want me in the building, they don't want me using the telephone, they don't want me to touch anything," Lauren said. But Lauren's bosses refused to bar her and instead brought in a doctor to convince the workers that they were in no danger. "I've since had apologies from co-workers," says Lauren. "Everybody now has gone the opposite way and has been very supportive. The employees even had a benefit dance for the family and raised about $500."
The money comes in handy. The Burks' once comfortable income has dwindled to nearly nothing. They are living on $17,000 raised by family and friends at various benefits. In September the Burks moved from their house to a nearby trailer so that Lauren's parents and her two sisters could move from Bethesda, Md. into the house in order to help out.
On Easter Sunday that extended family—and more than 100 friends—celebrated Dwight's first birthday with a party in a local social hall. "When Dwight was really sick in Richmond, we thought we'd never see his first birthday," says Lauren. "To see him turn 1 was a big milestone in our lives."
The joy was short-lived. By the end of May Dwight was hospitalized for hepatitis, and the doctors were not optimistic about his condition. Devastated, Patrick refuses to leave his son's side. "Patrick is in a very bad state about Dwight," says Lauren. I'll don't know what he will do if anything happened to Dwight. You can hardly get him to leave the room to eat, which, of course, is very bad for him. I have to force him to eat anything. He is in a very bad way emotionally. He doesn't sleep and he cries a lot."
As Lauren struggles to care for her son and her husband, she worries that she too might come down with the disease. Already she has the symptoms—fatigue, diarrhea, swollen glands. "I see my husband getting sick and going to the hospital and I'm afraid of experiencing that pain myself," she says. "Patrick has me, but—God forbid—if I lose him, I'll have to go through it alone. That really scares me."