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- October 26, 1981
- Vol. 16
- No. 17
Jimmy the Greek Faces His Longest Odds in a Family Fight for Life
Jimmy: First off, who knew what CF was? I came from people born and raised in Greece, and I can't remember anybody ever being sick in our family. My great-grandmother was 116 when she died, and my grandfather was 98. If anybody died it was an accident.
Joan: I had twin sisters and two brothers, and we were all well except for childhood diseases—measles, mumps, that kind of thing. I never even heard of cystic fibrosis. When our first daughter, Florence, was born in 1954, we were in New York. The doctors could look at her and know that something was the matter. I was in a small private hospital, and because the facilities were minimal they moved her to the pediatric section at Mount Sinai. I never even saw her. Three weeks later she died, and they never once told us that Florence had cystic fibrosis.
Jimmy: They just didn't know what the hell it was. Kids used to die in the cribs 20, 25 years ago, and they'd say they smothered in a blanket, things like that. Back then, Joan and I had sort of planned on a large family. She's Catholic, and I converted to Catholicism when we married, and we figured, hell, if kids came, they came.
Joan: Jamie was born two years later. My pediatrician examined him right away and said he was fine, there wasn't a thing wrong with him. Then about a year and a half later Jamie started going downhill. He began losing weight. He had a cough. He had runny bowels. My pediatrician in Evansville, Ind. said, "Take him up to Indianapolis to the children's clinic. I want another opinion." So we went there, just Jamie and I. I wasn't allowed to see him for two days, and then they called and said they were finished with the tests and that the doctor wanted to talk to me. He was very blunt: "Jamie will not live to be 2. He has cystic fibrosis. That's it." Then he told me, "I hope you're not ever going to have any more children." Well, at the time I was pregnant with Stephanie. He just shook his head. I remember picking up Jamie and crying in the taxicab all the way back to the hotel. Our plane didn't leave until the evening, and I put Jamie to bed, and we lay there, and I cried the whole time.
Jimmy: And I wasn't there. I had gone to Reno, and I remember Joan calling me in Nevada and telling me that Jamie was ill. That was all.
Joan: In these children you can control the pancreatic part of the disease, but it's the lung part that kills them. The lungs fill up with mucus just like healthy people, except we automatically get rid of our mucus. They can't. They get an infection, and it settles in their lungs, and then they get pneumonia.
Jimmy: She stayed up day and night with Jamie, cleaning out his lungs whenever he needed it. In the beginning it was every two, three hours, and she'd stay up all through the night. It was either that or he'd choke to death.
Joan: You take the child and put him over your knee and kind of beat him on the back until he coughs the mucus out. It's called percussion.
Jimmy: For five years it was a 24-hour proposition. She'd take a nap, and all of a sudden you'd hear him coughing, and she'd run in and spend the next hour and a half pounding that stuff out of him. You're talking about a little guy, a baby, and it would only come out a little at a time. He also had diarrhea constantly.
Joan: Eventually we were able to give him an enzyme to control the digestive problems, but until then the food would just run through.
Jimmy: For years we couldn't go anywhere together because Jamie had to be taken care of. Very few people ever entered our inner circle, our family circle. Not because we didn't like other people, but because we couldn't impose our problems on them. Joan just took care of Jamie all the time, and my priority was to go out and earn enough money to pay for the doctors and the medicines.
Joan: After Jamie and Stephanie, I had two miscarriages, then Anthony, who was all right, then Tina, who had CF.
Jimmy: And still not knowing what kind of a disease it was, whether it was because of her or because of me or what. They just didn't know.
Joan: Fortunately, Jamie was 12 and not all that ill when Tina was born. She had a thick tarlike substance blocking her intestines. Just after birth she had to have a colostomy and was operated on for seven and a half hours. I can remember standing in the hospital two or three weeks later, and these two doctors said to me, "There's nothing more we can do. We're now going to turn her over to you." And I just looked at them, and I thought, "Don't do this to me. I've had enough." And I wanted to run. I really wanted to run, but I had nowhere to go. And so I did the very best I knew. My children are very important to me, and I thought if I did for Tina what I did for Jamie, then somehow we could overcome it. For the first six months of her life I never left the house. It was total commitment. At times I resented it. I'd get terribly tired, and I didn't have much of a life of my own. But you learn to take it one day at a time.
Jimmy: Sometimes the other kids when they were young would blame her for being partial, for not spending more time with them. I did too. Many's the time when I'd forget Jamie was ill, that I'd say, "Hey, I'm here too. How about me?" But the question for her was, "Do I keep him alive, or do I take care of you?"
Joan: I guess I learned to be a strong person. Like one night Tina stopped breathing. She was just turning blue. I didn't have time to stop and panic. I just had time to take her by the heels, turn her upside down and start pounding her on the back. She was just a little person, and I was all alone. It was very difficult. Everybody wants their child to be healthy, so there's a lot of pain in dealing with CF. We managed to keep Tina alive for two and a half years, and then she died.
Jimmy: Everybody took it hard, everybody. Stephanie was about 13, and one night we couldn't find her. She had gone down to the mausoleum where Tina's crypt was and stayed with her all night. Tina's death was the hardest fight I believe I ever had in my life. I wouldn't go to church; I don't think I said a prayer for three years. It'll never be easy for me, even now—nine years later—when I see a little girl.
Joan: Still, there's reason for hope. They told us Jamie wouldn't live past 2, and he's 25 now. He still has good days and bad days, but he's been taking care of himself, experimenting with vitamins and minerals. And there are things now that make it easier, like therapy machines to help clear the lungs.
Jimmy: The big discovery now would be to find some test to see if parents are carriers. If you could do that, you could lick it. When Joan began taking care of Jamie she had to learn by trial and error. I think Jamie realizes that the more he studies about CF, the more he helps himself. All he ever heard from doctors since he was two years old was "You're gonna die." It ain't easy, but goddamn, he's licked it from a mental standpoint, and I'm proud of him for that.
Joan: For Jamie, and for all the children yet to come, I just hope the research continues and expands. CF wasn't even diagnosed until the 1930s, and they're still looking for a cause as well as a cure. For the families that have to face it, I can only say that it's easier to cope with it if you learn to accept it. You might resent it, but you've got to accept it—and try to do the very best you can.
Jamie: Two years ago I couldn't carry a bag of groceries, and there were months at a time when the pain in my chest was so piercing that I couldn't sleep. I had been trying to go to college, but I just never made it through a semester without getting sick, and yet for all I knew, this was to be expected. CF patients often don't live beyond 19 or 20, so getting sick and rapidly deteriorating seemed almost natural. Except deep down inside I felt that if the body was provided with what it needed, it could probably take care of itself. The problem was to find out what was needed.
As a child my health was good by the time I started grade school, and I was as active as I wanted despite CF. It bothered me that I wasn't as big and strong as some of my friends, but I took up bowling and archery and other sports that gave me a reasonable workout. I did have to cough hard to keep my lungs clear, and I spent a lot of time doing it, but I wasn't always in the hospital like a lot of other CF patients.
When I graduated from high school and started college at USC, it looked like things were going to be wonderful. They rapidly became a nightmare. Because of changes in the type and quality of food I ate, stress, the fact that I wasn't getting much exercise and the presence of CF, I started a gradual decline that went on for four years. The doctors I saw back in Las Vegas didn't understand my problems, and it was almost as though they thought my condition was normal and figured, "The kid's got CF; he's gone anyway."
I began studying as much as I could about CF—the research on nutrition, exercise, its chemistry, everything. Finally I got on a plane and went back to the Duke University Medical Center, and with help from the doctors there and my own work, I began to improve. Since then I've been gradually piecing together the program that I now follow. I think there is tremendous progress to be made in nutrition for CF patients, and I'd love to see good studies done on trace minerals. I don't think it's at all understood that exercise, intensive exercise, is critical to keep the hormonal and immune systems strong to deal with ever-threatening infections and perhaps prevent more severe problems. And the word on CF has to go out to more doctors. It's not uncommon for CF patients to go undiagnosed until they are in their teens. Some don't have the gastrointestinal problems associated with the disease, and their lung problems are explained away as asthma or allergies. CF patients should be treated at CF centers where there are a number of doctors to work with them on different aspects of the disease.
There's also progress to be made by parents. Some fear getting close to their children because they are afraid of losing them, and I think my father may have felt that way. But emotional well-being has tremendous influence on physical well-being, and developing that closeness is as important as any medicine. With the progress I think can still be made, there's a good chance that the right therapy will one day allow CF patients to maintain a normal life-style and live a fairly normal lifetime. As for me, I see a number of areas for research in CF, and I would like to be involved in them. I plan to be around stirring up trouble when I'm old and gray.
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