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Ryan White was just an average boy from a small midwestern city. But his short life left a lasting legacy in AIDS awareness.
My son, Ryan White, died in 1990. Ryan, a hemophiliac, contracted a fatal illness from a type of blood product critical to people with hemophilia. But at the time no one realized that a new and deadly virus was then lurking in the nation's blood supply.
Ryan had just turned 13 when he was diagnosed in December 1984. I was a single mother. We lived in Kokomo, Indiana. Ryan had been born there, as had his younger sister, Andrea. So had I, and my ex-husband and my parents. My mom's big worry when I was growing up was that I might marry someone who would take me away from Kokomo. You weren't ever supposed to leave Kokomo. Kokomo took care of you. It was home. Then Ryan was diagnosed with AIDS.
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When Ryan first became sick, we took him to the James Whitcomb Riley Hospital for Children in Indianapolis, where they discovered that Ryan had a rare form of pneumonia that usually indicates AIDS. But it was a few days before his physician, Dr. Martin Kleiman, knew for sure. I didn't want to tell Ryan until after Christmas. Ryan loved Christmas, and Dr. Kleiman couldn't guarantee that this wouldn't be Ryan's last.
"The disease is so new, and so few children have it, that we just don't know how long Ryan can hang on," he explained.
Looking back, two incidents at Riley should have warned me of what was to come. First was a snatch of conversation in the cafeteria, a nurse speaking to a doctor: "I will not go into that boy's room," she insisted, trying to keep her voice low. "I don't care what they say about not being able to catch it; I'm not taking a chance." It wasn't just what she was saying. It was the hard edge of fear in her voice.
Then two of Ryan's favorite teachers from his middle school showed up to deliver a big batch of get-well wishes from his classmates. Though Ryan didn't know about his diagnosis yet, I thought it was time to tell his teachers. They paled and, fumbling, pushed the cards into my hands. "We shouldn't bother him," one of them said. Quick as that, they were gone. Strange, I mused, they drove an hour to see Ryan, all the way from Kokomo.
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By Christmas Eve, Dr. Kleiman was able to take Ryan off the ventilator and removed his chest tube so he could talk again and celebrate Christmas. The day after, I told Ryan he had AIDS.
He didn't cry. He didn't even seem scared. He just wanted to know when he could go back to school. "Mom, I want to get on with my life," he said.
Before I left his room that night I switched on a little plastic guardian angel that church friends from Kokomo had given us when Ryan was in and out of the hospital with hemophilia. It was just a battery-operated night-light, but Ryan always had it by his bed whenever he was hospitalized.
In the morning Ryan told me something incredible. "Mom," he said, matter-of-factly, "I saw Jesus last night."
I didn't know what to say.
"He told me that I had nothing to worry about," Ryan continued. "He promised he would take care of me."
"Ryan, what did Jesus look like?"
Ryan kind of smiled. "Well, he didn't look anything like that picture I have hanging in my room."
He never again mentioned the incident. But I thought of it often. I hoped it meant that God would work a miracle and cure Ryan. Is that what you mean, Lord, by taking care of him? Are you going to give us a miracle?
Ryan came home in February but missed the rest of the school year. By summer he was well enough to get a paper route and hang out with his friends. He began agitating to go back to school. Ryan could never play sports because of hemophilia, so he poured all his energy into his studies. He was desperate to go back. He was bored to death sitting around the house watching I Love Lucy reruns.
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"All right," I said. "I'll tell them you're coming back in September."
It wasn't going to be that easy.
The school board wouldn't let him back. Everybody was afraid. The board claimed it couldn't guarantee the health of Ryan's fellow students, despite overwhelming medical evidence that AIDS wasn't contracted through casual everyday contact. Finally a court forced the board to relent and Ryan returned to school.