The happier days for Ryan White.
"What would you like to say to the scientists who are trying to find a cure for AIDS?" we asked Ryan White, the 16-year-old hemophiliac with AIDS who sat across from us on the comfortable living-room sofa at the Whites' Cicero, Indiana, home.
Without a moment's hestiation, he replied, "I'd like to tell them to hurry up."
One can hardly fault Ryan for his eagerness. A brilliant medical breakthrough had, in the early '70s, made hemophilia no longer a life-threatening disease. But then, through a quirk of fate, came the tragedy of AIDS. Undoubtedly, even while Ryan was reciving the disease by infusion, there were frustrated scientists at the Centers for Disease Control (CDC) who were already pounding on the table, insisting that the hemophiliacs should be warned and the high-risk blood donors deferred. Perhaps by the time Ryan was infused with the virus, there were scientists who were already on the track of removing the AIDS virus by heat-treating the Factor VIII (blood-clotting agent) that hemophiliacs receive. (See companion article by Randy Shilts, excerpted from And the Band Played On.)
As often happens with infant hemophiliacs, Ryan White bled profusely aftr circumcision. His mother explained: "He was circumcised in Kokomo, and he bled for three days before they realized that there was something wrong. They tried to stitch him; they tried ointments and everything, and finally he had lost so much blood that they had to do something. So they transferred him to Methodist Hospital in Indianapolis. In fact, he had lost so much blood that by the time they got him down there they didn't know if he would make it." It was then Jeanne White was told that her three-day-old son was a hemophiliac. "He had less than 1 percent clotting factor, so he is considered a severe hemophiliac," she said.
"He did fine with the clotting-factor [infusions]," she said. "I started giving it to him myself when he was about four of five years old, because he was averaging hospital stays two or three times a month. So they taught me how ti give it.
"When I go to Riley Hospital I pick up 10 or 12 batches. All of the batches are kept in my refrigerator until I use it up and go to get more."
At 13, Ryan learned he had AIDS. Jeanne White said she believes that "unknowingly, I had infected him with a bad batch of Factor VIII 12 times without realizing it.
"ryan was the first hemophiliac in our area to diagnosed, and he was one of the younger ones. Ryan had never had hepatitis, but then one year when we went in they asked me if Ryan had been sick or anything. They said, 'He shows that he's been infected with hepatitis, that he's had hepatitis.' And I said, 'Well, yes, he was sick for about three or four months last year, but nobody knew what it was.' Everybody kept saying, 'Well, there's a lot of flu going around. . . .'
"in 1984, after Ryan came down with AIDS, they began having all the hemophiliacs that were seen at Riley Hospital come in to be tested. So between '84 and '85 they began finding out that all of the hemophiliacs were AIDS-antibody positive.
"At the time he was diagnosed with AIDS, Ryan was a student at Western Middle School outside Kokomo. He was an honor student. He liked school. He had played baseball until being hit with a ball hard enough to cause bleeding. He had to quit that. At 13, he had a girlfriend, Chris."
"But that didn't work out," Ryan chimed in. This was before AIDS education and penetrated the heartland, and panic--fear from lack of knowledge--created a problem.
"Then one of the TV stations called," Jean said, "and asked if they were going to allow Ryan in school. I told them I wouldn't know until the middle of August. Meanwhile, they called the school, and the school said they were not going to accept Ryan. I knew that all the other kids who were AIDS-antibody positive were going to school without any trouble, and they were just as contagious with the virus as Ryan was."
It was enough to break a mother's heart--having the superintendent decide that Ryan couldn't stay in school. Because Ryan's diagnosis was one of the first in Indiana, fear and panic among parents caused a battle in the school district. It split the community.
"They didn't know what to do about AIDS. They didn't want it involved in their lives," Jeanne said. But as a parent, she understands their feelings. "That's why I've never been bitter," she added. "People there now tell us that they wish they had spoken up for us. The fighting is over."
Jeanne White told of how the tragedy appeared from her vantage point: "When Ryan first became ill, I really got into it with the president of the National Hemophilia Foundation. I was very upset because they didn't come forward to help me out at all. I don't mean with money--I mean support-wise. I couldn't get any help from them when I was trying to get Ryan back into school, because I knew hemophiliacs all had it. They tried to hide [AIDS among hemophiliacs].
"I couldn't go to the medi and tell them that 95 percent of the severe hemophiliacs now were positive for AIDS, because then I would be hurting all my counterparts. I couldn't do that to the mothers I've talked to over all the years.
"The president of the National Hemophilia Foundation told me, 'Well, we're letting the medical profession fight our battle for us, because we're trying to keep a very low profile.' And I said, 'We're talking about every child, every hemophiliac here. We're not just talking about Ryan White.'
"i spent two hours one night on the phone with him, and I was just very irate after I finished. He was a lawyer. He is no longer the president of the foundation."
Dr. Bruce Evatt, the resident hemophilia expert at the CDC, understood the confusion and the frustration Jeanne was feeling. His insights from his special perspective: "When you get hit by a tragedy like AIDS, there is, of course, a number of different ideas on how to handle it. I think the early days were especially difficult, because at that point there were very few patients that had developed AIDS. Most of the hemophilia-treatment physicians had invested a great dealof time and had seen these patients' lives transformed by the [blood-clotting] material, and then the thought that this material that had been such a transforming gift had suddenly become a killer, so to speak, created a great deal of anxiety. Certainly there was a great deal of diversity of thinking as to the proper way of managing this and in investigating such epidemics. It ranged all the way from denial and 'it didn't occur' to panic and everything in between. I think that in those early days there were certainly a few people at the National Hemophilia Foundation who were very instrumental in getting everything on course and in developing some very sound processes for proceeding."
A New Life in Cicero
After leaving Kokomo, Ryan said, "I didnht want to die there. I really didn't want to be buried there, either. I want to be buried here. I like it. It's peaceful and quiet." Ryan was refering to Cicero Cemetery.
Ryan was recently out of school for two weeks with shingles. He had them on both sides with a lot of itching. Once again his motgher had to take time off work. "I don't get paid when I dont' work," she told us, "and I've had to miss an awful lot of work. But General Motors has been very cooperative. I've missed way over the limit they allow, and still they've never said a word to me.
"The doctors wanted to put Ryan in the hospital with his shingles, but he didn't want to go. Dr. Martin Kleiman was worried about infection, thinking that if any of them got infected, then we'd be in trouble. [Dr. Kleiman is the infectious-disease specialist who takes care of Ryan at Riley Hospital for Children in Indianapolis.] The relationship between the two is beautiful," Jeanne said.
Jeanmne furrowed her brow and continued, "Ryan is on AZT now. I don't know. Everything I read about it now is bad. I read that it poisons your system. You don't know what to do. He seems to be doing pretty good, and I just don't know what the answer is. I know it's scaring me now, but he was doing so bad when they put him on it, and of course it really made the difference."
One understands a mother's anguish about a toxic drug, but one senses that his mother has good instincts. She reads avidly about AIDS treatments. She must know that the chances are that the new drugs for Pneumocystis pneumonia probably saved her son's life when he first developed AIDS and was deathly ill and on a respirator to keep him alive.
Dr. James Smith, an eminent pathologist at the indiana Univeristy School of Medicne, has been trying to develop better drugs for keeping Pneumocystis patients alive longer since the mid-1970s, before the AIDS crisis began. Because such a large number of AIDS patients get Pneumocystis, new drugs for it have now taken high importance throughout the world. Indiana University recently received a large federal agent to study Penumocystis under Dr. Smith's direction.
Jeanne doesn't take all this for granted. Nor does Ryan. They both know that many of Ryan's hemophiliac friends have already died. Ryan had a good pal from Boston with whom he liked to talk and compare notes. "But he is dead now," Jeanne told us. Ryan and his mother both know that it's the excellent care and the caring people in Indiana that have helped keep Ryan alive.
Governor Orr of Indiana declared a Ryan White Day, giving Ryan and his mother "Sagamore of the Wabash" awards, and his school the "Spirit of the Heartland" award, to thank them for their great courage in furthering the understanding of AIDS.
"Fear frightens--it hearkens the unknown, the feeling of being in an unfamiliar dark room where you don't feel safe," Orr told more than 600 of Ryan's classmates and teachers attending the ceremony. "Thank God you can turn on the light."
Bob Knight, the indiana University basketbal coach, invited Ryan to an I.U. tournament game as his guest. The HAM radio operators of indiana have given him a Morse-code kit so he can get a license to talk to friends, whether with or without AIDS, around the world. The girls in school are hugging him again.
Another factor in Mrs. White's courage is keeping up the good fight for Ryan in her faith and that of her son. Ryan was baptized at the St. Luke's United Methodist Church in Kokomo. He smiled when we gave him a Norman Rockwell Bible.
Jeanne White told us that he kneels in prayer every might to thank God for one more day.
We asked him if he trusted in God.
"Yes, I sure do," he responded
"does believing in what God says in the Bible make a difference for you?" we asked.
"Yes, there's always hope with the Lord," Ryan said.
"do you pray often?"
"Do you have any fears now?"
"not really. I have a lot of trust in God.
"You have a lot of hope for the future, don't you?"
"A lot of hope," Ryan said with feeling.
His mother added, "I think the Lord has chosen Ryan for a reason, and I feel like the Lord's going to take care of him. Ryan has done much better than most AIDS patients do. So how can we complain about that? It's very unfortunate that he has the afflication, but I feel that for a person who has AIDS, he has done very well. We can feel very fortunate for that."
Ryan's faith and hope are in perfect harmony with another Methodist AIDS patient, the Rev. Donald Wade, who was recently recovered from a second bout of Pneumocystis pneumonia. Pastor Wade has not yet met Ryan, but he plans to. His wife teaches visually impaired children in the school district where Ryan now attends school.
With his faith and positive outlook, Ryan White is anticipating a career in advertising. "It looks like fun," he said. "I like to think up slogans and rhymes." Thus, Pastor Wade may find in Ryan the ideal hero for a book he proposes to write, titled The Positive Side of AIDS.
The positive side? Who better go ask about that than the Rev. Donald Wade himself?
"The book will deal with some of the good things that happen to you as a result of AIDS," he said. "It isn't all bad, and the spiritual enrichment and deepening and some of the humorous things that happen will present a different side to AIDS."
When Pastor Wade and his beautiful family visited our church last year, he told us the press should stop its continual references to AIDS as invariably fatal and hopeless.
"Yes, we are all going to die fo something, you know," he said. "And so much is being done in the way of research. i know that some of the medications I've gotten--I'm sure two years ago they didn't have. I know they are helping me, and if I can just hang on, I'm sure they'll come up with some more good stuff. So I just feel like there is a positive side, and I know in my own life it hasn't been all bad. It's disappointing to have AIDS, but it certainly deepens one's spiritual life. So, I think there is a positive story to tell. There are even some humorous things that have happened to me."
We asked Pastor Wade if he had a humorous incident we could pass on to Ryan. "Let me think for a minute," he said. "Several fun things have happened. When I was speaking at church, this little girl--she wasn't even a teenager--very seriously asked, 'Now, if I talk to you over the phone, or if I drink from the same drinking fountain, I can't get this from you, can I?' She was really very concerned--very sincere. She wasn't just putting me on--she really wanted to know. Little things like that kind of brighten your day."
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|Title Annotation:||hemophiliac boy who contracted AIDS from infusions; includes sidebars on HAM operators helping Ryan and other AIDS patients, and medical researchers protecting hemophiliacs|
|Publication:||Saturday Evening Post|
|Date:||Mar 1, 1988|
|Next Article:||The corrupting of Factor VIII.|
|AIDS and hemophilia: still a risk?|
|Future 'patchwork' cure for hemophilia?|
|The corrupting of Factor VIII.|