Ryan’s Hope : Legacy: Through his extraordinary courage, an ordinary young boy inspired thousands of AIDS sufferers and taught a nation some lessons in compassion.

He was an improbable American hero, a slight, physically fragile youngster from a place called Kokomo.

Ryan White was only 12 in 1984 when he was told that he had AIDS, contracted through blood clotting treatment to combat his hemophilia. It was a death sentence, but the grade schooler chose not to see it that way. To him, what counted was what he did with what he was given.

People were always asking him if he was afraid of dying and, with a wisdom beyond his years, he would answer, “I’m not afraid. Someday you’ll die, too. I’m just not ready yet.”

He never was ready. At the end, Ryan White, 18, clung to life, hooked up for seven days to a life support system and in a coma induced by painkillers and the sedatives that allowed his body to tolerate the intrusive equipment. If there was any chance, he wanted to live, said his physician, Dr. Martin B. Kleiman. “He loved life.”

There had been earlier medical crises for Ryan but, all in all, he had had five good years. With AIDS, Kleiman said, as he announced Ryan’s death, “some will do better than others, but you’re not going to beat it unless you don’t catch it.”

Still, in the short time he had, Ryan White taught the nation a few other things about AIDS: that anybody can get it and that those who do deserve to be treated with love and compassion.

“He was a young hero of the ‘80s, he really was,” said Barbara Cleaver of Torrance, president and co-founder of Mothers of AIDS Patients--Los Angeles. “I wish all PWAs (Persons With AIDS) would just come out and stand up, and their families for them, and with them. I wish all parents could stand with their heads high and not be ashamed. There’s nothing to be ashamed of.”

Cleaver, who lost a gay son to AIDS in 1984, added, “Perhaps this will make parents realize they should be there for their kids.” Maybe, she said, “there will be some family healing” and that will be part of Ryan White’s legacy.

Ryan and his mother, Jeanne White, who’d been divorced from Ryan’s father, Wayne, since the boy was 4, were among the first in the nation to stand up. In 1985, they went public with their tragedy, taking on their local school system in a discrimination suit after Ryan was barred from attending classes at Western Middle School near Kokomo.

“Ryan’s fortitude and perseverance and never-say-die attitude caused all of us to be educated,” said Charles Vaughn Jr. of Lafayette, Ind., whose law firm brought the suit that led to Ryan’s being readmitted to school. “We found out, ‘My gosh, this could happen to anybody.’ ”

In Kokomo at that time, Vaughn said, “They didn’t want to hear about how AIDS was transmitted. The fears and anxieties of the public were at an all-time high.”

Vaughn remembers, “He said, ‘I’m Ryan White. I want to go to school.’ We said, ‘Ryan, it’s not going to be easy.’ He said, ‘That’s fine. Once people understand I’m no threat, it will be OK.’ ”

“He saw so much in his short life, and he dealt with it so well,” Vaughn said.

Howard Hess, an associate professor of social work at Indiana University who is investigating the needs of AIDS patients and their families in the state--and the extent of discrimination against them--spoke of Ryan White’s “magnificent struggle.” While standing up for their rights when they were “quite alone,” he said, Ryan and his family made the people of Indiana “re-examine their attitudes” about the disease. “They provided for us in this state a kind of rallying point.” But, added Hess, who is affiliated with the Damien Center, an Indiana organization assisting persons with AIDS, “discrimination of the kind Ryan had is still happening in cities all over the state. You’re still getting people in our cities who can’t find dentists, can’t find physicians outside of Indianapolis.”

With an estimated 12,000 to 14,000 Indiana residents who now have tested HIV-positive, Hess said, “you’re seeing the tip of the iceberg” in the state, even though the Indiana Board of Health has recorded only 768 AIDS cases since 1985.

In attitudes toward AIDS, he added, there’s still a tendency to separate the “innocent” from the “guilty,” the former being the Ryan Whites, the latter those who contracted the disease through their gay or bisexual lifestyle.

Nevertheless, Hess said, “one of Ryan’s major contributions was the idea that you can remain a vibrant, living, healthy person for a long period of time. That fight and that spirit have created a very important model.” Hess pointed out that AIDS patients now are living up to 15 years after being infected and that the onset of symptoms can be delayed for years if HIV-positive people get medical care early. It is the Ryan Whites, he said, who encourage people to come forward.

As he fought for his life in the intensive care unit of Riley Hospital for Children at Indiana University Medical Center, the hospital switchboard fielded thousands of calls daily for, or about, Ryan.

Those who called, or came to see him, included Vice President Dan Quayle, Paul McCartney (who couldn’t get through), Willie Nelson, Elton John, Michael Jackson, Tom Selleck, Phil Donahue, Joe Montana, the Rev. Jesse Jackson and Greg Louganis, who once gave Ryan one of his diving medals.

There were calls from Mothers of AIDS Patients, from communities that were holding prayer vigils, from a woman who wanted to send Ryan an anointed handkerchief. The Boston Bruins were sending hockey sticks and shirts. Others wanted to give Ryan skateboards, blood, money. People dropped by the hospital media relations office with $5 or $10 bills “for Ryan.”

The money will go to the Ryan White Fund to defray costs of medical care for children with AIDS. The fund address is P.O. Box 40, Noblesville, Ind. 46060. At Ameritrust National Bank in Noblesville, where the trust fund is set up, employees had been wearing red ribbons to show they were pulling for Ryan White.

“Ryan, in terms of his impact on AIDS patients, has been phenomenal,” said Riley Hospital administrator James Shmerling. Ryan had been a patient at Riley, off and on, for five years, and, Shmerling said, “the kids knew him very well.” Shmerling and the hospital staff worked hard to avoid a media “circus” at Riley, where the sickest of the sick children are cared for. Extra security had been put on (several unauthorized visitors had tried to sneak into the ICU). And he was cognizant of the feelings of other parents who also had desperately ill children.

No one was discussing the costs of Ryan White’s 10-day, round-the-clock care in the ICU. He had insurance and, Shmerling said, “whatever is not paid for, we certainly will absorb.” Jeanne White has been on leave of absence from her job at General Motors in Kokomo since December.

In the hospital lobby, a fanciful atrium with glass and chrome bubble elevators and oversized stuffed animals perched in unlikely places, Emily Blauvette, 8, tossed pennies into the pool, each with a get well wish for Ryan. Emily had come to the hospital with her mother, Chris, to see the White family. Chris Blauvette, who still lives in Kokomo, grew up with Jeanne White. She’s upset that Kokomo has taken a bad rap.

“Western School, like the rest of the country, was uneducated about what AIDS meant,” she said. “They acted out of concern. But if Kokomo had to get a black eye to give this national attention, maybe that’s a plus.”

Mothers pulling their children through hospital corridors in the little red wagons that are Riley’s answer to wheelchairs exchanged the latest rumors about Ryan and which celebrities were alleged to have visited on a given day.

In the tiny chapel, an unsigned letter written on school paper with a red ballpoint pen asked, “Dear Lord, help Ryan get better. He has suffered enough pain. Please send a miracle. He really needs one. . . .”

Upstairs, in a small dark room decorated with balloons and stuffed animals where Ryan lay hooked up to machines, Elton John busied himself putting up get-well cards and changing tapes so that Ryan would have music continually--music by John, Janet Jackson, George Harrison.

In an interview after one of his daily briefings to the media, Kleiman, who is director of the hospital’s infectious disease section, described Ryan as “an unassuming young man” who “communicated with Presidents as well as he communicated with his colleagues at school.”

From the outset, he said, “He was well aware of the consequences of his illness but he did not dwell on them. He knew what it was and fully accepted that he had it. And he chose to live healthy and well and enjoy himself.”

Ryan’s legacy, he said after his death, “was to bring attention to the fact that this is an infection, it’s not a lifestyle.”

Kleiman, a man who wears a photo button of his own two children on the lapel of his white lab coat, called Ryan’s death “a deeply felt personal loss.”

Andy Weisser, spokesman for AIDS Project Los Angeles, pointed out that there is considerable discrimination in the Los Angeles workplace against persons with AIDS and said Ryan’s story may “let people know that, in many cases, it is OK to talk to their co-workers about their diagnosis,” to know also that “they can continue to work and they can make very valuable contributions.”

Ryan “took the risk,” Weisser said.

He does not believe that Ryan’s impact was diminished by his being a so-called “innocent victim. Every person with AIDS is innocent,” he said. “There’s not one person who has intentionally gone out to get infected.” Ryan understood this, Weisser said. “He stressed the humanity of the disease.”

Elizabeth Glaser, who founded the Los Angeles-based Pediatric AIDS Foundation to raise money for research and education, said in a statement that Ryan White has been an “inspiration” to the foundation through his courage in bringing national attention to the isolation facing every family with a child infected with the HIV virus.

Glaser started the foundation after she and her husband, actor Paul Michael Glaser, lost their daughter to AIDS as a result of a blood transfusion Elizabeth required after childbirth. She herself is HIV-positive, as is the couple’s son.

Elizabeth Glaser said, “Ryan White has shown the world that children infected with HIV can carry on normal lives, attend school, skateboard and play with their friends.

“His battle reminds us of the value of each and every day. It points out how important it is that our federal government commit the necessary money today because tomorrow is too late.”

According to AIDS Project Los Angeles, there have been 8,891 cases of AIDS, including deaths, recorded in Los Angeles County since June of 1981. In California, that number is 25,035. Nationally, the figure is 121,645.

In Los Angeles County, 48 of the AIDS cases have been hemophiliacs, four of these children. Another 210 persons contracted the disease through blood transfusions, 34 of these children.

There are 500 hemophiliacs born each year in the United States and, according to Alan Brownstein, executive director of the National Hemophilia Foundation in New York, about 52% of the nation’s 20,000 hemophiliacs are now HIV-positive, infected with tainted blood products before 1985 when better cleansing methods made the blood clotting protein they need HIV-free. About 1,300 of these hemophiliacs have, like Ryan White, been diagnosed with AIDS.

Through Ryan White’s courage in speaking out, Brownstein said, the public now understands “there is no scientific basis for discrimination. Ryan was really an inspiration to the entire hemophiliac community, the entire AIDS community.”

He recalled that Ryan was once asked by a reporter what he’d say to scientists seeking a cure for AIDS and he replied, “I’d tell them to hurry up.”

Brownstein asked, “How could it be said better than that?”

Christopher MacNeil of Ft. Wayne, Ind., who was a reporter for the Kokomo Tribune, first told the story of Ryan White in April 1985 and later covered the legal case. “I had a lot of problems (for befriending Ryan),” he recalled. “I was called (homosexual pejorative). People even said I must have been having an affair with his mother.”

MacNeil, whose newspaper editorially supported Ryan’s right to attend school, said he received middle-of-the-night phone calls and had obscene messages spray painted on his apartment building.

MacNeil, who developed a close friendship with Ryan and his family, sized up Ryan’s impact on the AIDS battle: “He said, ‘I am a people and if it was a homosexual who gave this to me, he was a people, too.’ Ryan put a face to the disease, and it scared us all.”

In a way, MacNeil said, “Ryan was always an adult. When he was diagnosed, and got thrust into the spotlight, he had to grow up. It robbed him of his childhood. He was an adult trapped in a little boy’s dying body.”

But, throughout his ordeal, MacNeil said, Ryan’s attitude was, “Hey, this is it. This is what life has given me. Let’s make the best of it.

“He’s taught me so much.”

MacNeil has spent a great deal of time pondering the Ryan White phenomenon, trying to pinpoint just what it was that made him special, that attracted the rich and the famous and, in so doing, helped to change a nation’s attitude toward people with AIDS.

Finally, MacNeil said, it became clear to him: “Maybe it’s just that people do give a damn. Maybe people care. That just blows my mind.”

Kleiman expressed some of the same feelings. Of the celebrity parade at the hospital, he said, “their concern has been Ryan and Ryan’s family, not to glorify their own careers. I’ve been greatly impressed by the sincerity of the people who have come to see him, caring, nice people.”

Carrie Van Dyke, the family spokeswoman, quoted Jeanne White: “All this time I wasn’t sure what we were doing was having an impact. Now I know it has.”

It was a strange gathering Sunday afternoon, the day of Ryan’s death, at the White home on Overlook Circle, a loop of newer houses rimming Morse Lake in Cicero, a pleasant town of 4,500 about 45 minutes north of Indianapolis. It was in Cicero that Jeanne White, Ryan and Ryan’s sister Andrea, now 16, found a warm welcome after deciding to leave Kokomo about three years ago.

Sunday, her long vigil at her son’s bedside over, Jeanne White had returned home and was reminiscing about Ryan with those who had come by to pay their condolences. Jeanne White, General Motors plant worker, greeted developer Donald Trump with a kiss, embraced Michael Jackson and Elton John.

These were Ryan White’s friends.

Steve Dillon, principal of Ryan’s school, Hamilton Heights High, home of the Huskies, came by, too. There would be school, as usual, on Wednesday, the day of Ryan’s funeral, he said, but “any student who wishes to attend will be excused.”

Funeral services for Ryan will be at 2 p.m. Wednesday at Second Presbyterian Church, 7700 N. Meridian, Indianapolis. Burial, which will be private, will be in Cicero.

Ryan White wanted to be buried in Cicero, at the cemetery on a bluff overlooking Morse Lake. He loved Cicero, a place where cars brake for geese crossing the bridge, where there are front-porch swings on old frame houses and Purkey’s two-chair barbershop is a fixture on the main street.