Ryan White died 20 years ago today

[selena]

How time flies.

He was such a brave little boy, and we owe much of our AIDS awareness to him and his mother.



From the People archives:

Candle in the Wind
By Bill Shaw

Here is the moving, untold story of the final hours of Ryan White, the boy whose battle with AIDS touched America's heart

Ryan White never surrendered?not to AIDS, not to despair, not to the fearful public passions that his illness once aroused. Diagnosed in 1984, he successfully challenged his school board in Kokomo, Ind., for the right to attend classes?and became a reluctant celebrity. Later he moved with his mother to nearby Cicero, Ind., in hopes of finding a more ordinary childhood. But Ryan White was not ordinary. With his smile and grace, he taught the world not to surrender to fear. This is the story of his final journey, told by the only reporter Ryan's family wanted to be there

The only sound in Room A-460 of the James Whitcomb Riley Hospital is the rhythmic thunk of a ventilator pumping air through a respirator. Ryan White is unconscious now. He is beyond pain and feeling, in that evanescent twilight between life and death. A heart monitor beeps quietly by his bedside, two nurses in face masks silently monitoring its luminous dials.

Beside the bed stands Jeanne White, 42, the divorced factory worker from Kokomo, Ind. Just a few days earlier, Jeanne, Ryan and his sister, Andrea, 16, were in Los Angeles for an Academy Awards night party. Ryan later complained of a sore throat and said he wanted to go home and see his physician, Dr. Martin Kleiman.

"That scared me," recalls Jeanne.

They flew all night, arriving in Indianapolis at 6 A.M. Thursday, March 29. They went directly to Riley Hospital at the huge Indiana University Medical Center. By Saturday, Ryan's condition had deteriorated alarmingly. The next day Kleiman told Jeanne that Ryan's chances of pulling out of this latest crisis were 10 percent?and that was optimistic.

"He's Ryan White," said Dr. Kleiman, "that's why I said 10 percent."

Now, at Ryan's bedside, Jeanne clings to the man beside her, the friend who has stood by her throughout both grim and good times. Singer Elton John was one of the first prominent people to offer support shortly after Ryan, a hemophiliac, had contracted AIDS from a tainted blood transfusion five years ago.

AIDS was a new and alien specter then, and when the public fear and early ignorance led frightened parents to ask that Ryan be kept out of school, Elton John had become a friend, writing, calling or visiting the boy every month. Now, standing in this hospital room, the singer looks ashen, his face a mask of anguish. He had flown all day from Los Angeles, slipped in a back door of the hospital to avoid the press and hurried to the bedside.

"Ryan, it's Elton," whispers Jeanne, leaning over to smooth her son's spiked hair. "We put some mousse on it earlier in the day, Elton. I wanted him to look good." She sags against her friend, sobbing quietly. Ryan seems so small and helpless, swallowed up in the Donald Duck and Dumbo sheets the hospital has provided. Although he's 18, AIDS has kept the ebullient boy from growing beyond 5 ft. and 90 lbs.

At first John is simply overcome, unable to speak. It was just last summer, at a concert in Detroit, that he had called Ryan to the stage, sat him down on the piano bench and sung "Candle in the Wind," his old song about Marilyn Monroe, another soul destined for a dark journey:

It seems to me you lived your life
Like a candle in the wind
Never knowing who to cling to
When the rain set in...

[selena]

Continued....

************

The superstar and the Kokomo factory worker hug and stare. Only the thunk-thunk of the ventilator and the beep-beep of the heart monitor fill the silence. Finally, Elton finds the words for this moment, so different from that concert stage of a year ago. "Ryan," he says softly, leaning close to the blank face. "Michael Jackson called to see how you were. You can't turn down a superstar like that. I'm grade B compared to Michael. Everyone from Los Angeles sends their love."

He rubs his hand lightly across Ryan's forehead. "We need you, Ryan, and we love you," he says, slumping against Jeanne. She cries and leans over her son.

"We're here, honey. We love you very much..."

Outside Room A-460, Ryan's friend and physician, Dr. Kleiman, a pediatric infectious-disease specialist, stands against the wall. He's the man who five years ago told Jeanne White that her son had AIDS and would die, probably in three to six months. Asked later to explain Ryan's longevity, he had said, "Because he's Ryan White. He's got a great attitude, and that plays a big part. He's optimistic, not a quitter."

It was Kleiman who Sunday morning ordered Ryan heavily sedated and hooked up to the ventilator to keep him alive while he worked to stabilize other medical problems. "It was Ryan's decision to be put on the respirator," he says. "I explained everything to him, why I felt it necessary, and he said, 'Go for it.' " Soon afterward, bleeding internally, the boy sank into a deep, drug-induced coma. His kidneys began to falter, and infections spread through his tired body.

"Ryan's failing," Dr. Kleiman says. "It's just a question of time. He's terribly ill."

"I didn't even get to say goodbye," Jeanne tells Elton.

They walk alone down the long corridor. It is late at night, and Elton John is in no hurry to leave.

"Ryan lit up my life," he says to Jeanne.

Inside a small waiting room at the end of the corridor, those few who are closest to Ryan sit and wait. His father, who was divorced from Jeanne in 1978 and has had little contact with the family since then, has already come for a brief visit. But Ryan's sister, Andrea, is here, herself an AIDS casualty of a different sort. She had been a nationally competitive, award-winning roller skater before his dreaded sickness forced a reallocation of her mother's time and the family's scant resources. With her are Ryan's grandparents Gloria and Tom Hale, who had rushed home from Florida over the weekend when Jeanne called. They have been joined by Jeanne's brother, Tom, and her sister, Janet Joseph, who drove up from her home in Birmingham. Jeanne's good friends Mary Baker and Betsy Stewart are here, along with a few of Ryan's pals from school in nearby Cicero. Heather McNew from Hamilton Heights High had cut school two weeks ago to go shopping with Ryan at the mall. Dee Laux, 19, had been his date at last year's prom. When you're 19, and time holds you heedlessly in its arms, the idea of a prom date teetering on the threshold of death is unthinkable. "I felt lost," she had said after her last visit to Ryan's room. "He didn't even know I was there, but I told him I was thinking about him and we all loved him."

When she can, Grandma Hale sleeps in the waiting room on a chair. Mostly she keeps a close eye on her daughter, who at times appears ready to collapse. "Ryan is a tough little boy," she says. "I'm worried about Jeanne."

Outside Ryan's room, Elton, wearing a long earring in his right ear and a black baseball cap that says BOY AFRICA, stands and talks for a long time with Grandpa Tom Hale, who wears a purple jacket with KOKOMO BASS ANGLER in Script across the back.

The Rev. Bud Probasco, pastor of the Center Chapel United Methodist Church in Muncie, Ind., has known the Whites for 14 years. He met them back in Kokomo when he was assistant pastor at Jeanne's old church, St. Luke's United Methodist. Jeanne told Bud that Ryan wanted him to preside at the funeral. He says he was humbled by the request.

"Ryan has been called for a purpose," says the Reverend Probasco at the hospital. "You know, I don't want to preach, but I think God is communicating to us through Ryan to give us understanding and compassion and empathy. He has changed the way the world views people with AIDS."

Bud is a keen observer of little things. He has watched Elton John file hundreds of phone messages for Jeanne, clean up coffee cups and sandwich wrappers, distribute $600 worth of stuffed animals he bought for the other critically ill kids on Ryan's floor. "They're too sick to care," Elton says, "but I feel so helpless in this place, I had to do something. I did it for myself, I guess." Bud watches how the singer drifts down to Ryan's room about once an hour. He notes how Elton John sits by Grandma and Grandpa, just listening to them talk about their grandson. They ramble on like people often do when they're exhausted and heartbroken, but he listens until they can talk no more. "He loves those people," says Rev. Bud. "Elton cared about Ryan and Jeanne and Andrea when no one else did. Years ago when everyone was going the other way, Elton came toward them. His support has been constant and unwavering.

"God calls people for a purpose," says the preacher. "Strength was needed, and God called Elton. The previous strength and inspiration for this family is in that bed," he adds, nodding toward Ryan's room.

Bud's eyes are wide as saucers. He hasn't slept in days but thinks he might get a hotel room for the night. There's one a block away, but he heard it's expensive.

"They told me $40 a night," he says, stunned by the steep price. "I'll do it, though. I can't be there for Jeanne if I'm tired."

The word to the outside world is that Ryan White's condition remains the same. Critical but stable.

Actually he's getting worse all the time, says Dr. Kleiman. His kidneys aren't working at all now. Poisonous fluids fill his body, turning his skin yellow and puffing him up like a balloon. His feet and hands have turned deep purple because of poor blood circulation.

Late at night, when everyone has left, Jeanne moves her rocking chair next to Ryan's bed and places a little illuminated guardian-angel figurine by his side. Jeanne bought the angel when Ryan was stricken five years ago. She rocks back and forth, her eyes closed as nurses wearing protective face masks, goggles and rubber gloves move about the room. Jeanne wears no gloves. She strokes his hand and whispers to him.

"Baby, I love you," she murmurs. "You're gonna do good for everybody who is sick. It's a shame it has to be you."

Elton has a new record coming out Monday. His L.A. office is going berserk because he's not there.

"I'm staying here through the weekend and through next week and the week after that if I'm needed," he tells his office during a tense phone call.

Elton has become the binding force that holds this frightened but brave family together. He's the father figure, the source of strength and organization. Without him, there could be chaos. When the doctor emerges with some bit of news, he confers with both Elton and Jeanne. When the family needs something, everyone looks blankly at each other until Elton picks up the phone. The relationship is not one-sided. "These people have given me so much," he says. "They inspire me, they uplift me. They've given me more than I could ever return. Such strength and courage, such dignity and such decency."

Ryan's final journey begins about 8 P.M. Saturday. His blood pressure slips to dangerously low levels. Dr. Kleiman and his colleague Dr. Howard Eigen are summoned from home.

Elton has just left to visit his friend Bonnie Raitt and sing a couple of songs for the Farm Aid Concert that is in progress a few blocks away in the Hoosier Dome. As he walks onstage, there is a thunderous standing ovation from 45,000 people.

"This one's for Ryan," he says shakily, inspiring a second, even more thunderous ovation. You can hear a pin drop in the cavernous building. He sits at the piano and begins the song that last summer he sang with Ryan by his side. When he finishes, the hall erupts in 10 more minutes of deafening applause.

"I couldn't look up," an emotional Elton admits later. "I was afraid I'd lose it before I finished."

He returns by 9 P.M. to join Jeanne at Ryan's bedside. She sits in her rocking chair and Elton hugs her. Grandma and Grandpa walk in. They stroke Ryan's bloated arms and legs. Andrea rushes in and collapses into her mother's arms. Together they weep and pray.

By midnight, as teams of nurses and doctors scramble in and out of the room, desperate to shield this flickering candle, Dr. Kleiman stands in the hall by himself. Ryan is dying. "I feel terrible," he says. About 1 A.M. on Sunday, Jeanne takes a call at Ryan's bedside from longtime family friend Michael Jackson. Michael bought Ryan a red Mustang about a year ago, and the Whites have been frequent guests at his California ranch.

Michael wants to come that minute. He is in Atlantic City.

"How long will it take you, Michael?," she asks. Jeanne looks at a nurse wearing goggles. "Two hours?" she asks the nurse.

The nurse shakes her head.

"Michael, don't come, honey. Ryan isn't expected to last two hours. We know how much you love him." Jackson says he'll be there in-the morning, and he is.

Rev. Bud steps in and asks for a prayer. "Dear Jesus, this little boy is going to a better place. Please accept him. He brought us all together in this room, and we love him for it. We love you, Ryan. Amen."

[selena]

Continued....

************

Ryan's blood pressure continues to drop through the night. By the soft light of a Palm Sunday dawn, his gentle flame flickers for the last time. He will die surrounded by close friends and family and the bittersweet songs of his favorite singer, whose music comes now from a bedside tape player.

"Just let go, Ryan," Jeanne White says quietly. "It's time, sweetheart. It's time to go."

His blood pressure drops further.



"Goodbye, buddy, goodbye, my pumpkin," says Jeanne as she strokes her son's hand. Her tears are gone for now. Only a calm soothing voice. "I want to kiss you goodbye one more time," she murmurs, leaning across the bed, stroking his forehead and gently kissing his cheek.
The green dial on the heart monitor clicks off. Ryan's chest is still. A nurse attempts to restart the monitor. It flashes bright red. No heartbeat. No blood pressure. A doctor leans over with a stethoscope and nods. Ryan White is dead at 7:11 A.M. on Palm Sunday.

The light in the guardian-angel figurine is turned off.

Crying, the nurses remove their masks, goggles and rubber gloves. Jeanne clutches her son's small hand. Grandpa Tom Hale leans over and kisses his grandson. He is followed by Ryan's sister, Andrea. Then Grandma, then Uncle Tom. Finally, Elton John kisses him one last time.

"Goodbye, old friend," says Elton, his eyes rimmed red. "I love you."

Rev. Bud Probasco leads them into the hall. They all enter a small room, joined by Jeanne's friends—Betsy Stewart, her daughter, Jill, and Mary Baker.

"Join hands in a circle," says the minister, and "we'll say goodbye to Ryan."

A circle forms in the little room as the Sunday sunshine streams through the windows. Hands are clasped. Grandma, Grandpa, Elton, Jeanne, Andrea, Heather and the rest.

"Thank you, Jesus, for giving us Ryan," says Bud. "For giving us the privilege of knowing Ryan and learning so much from him. For having him as long as we did. He gave us understanding and compassion, and he brought us all together in this room one last time. He was a little boy, but he taught us all about big hearts."

[fatfoo]

RIP Ryan White. I have heard about him before. He raised awareness of AIDS.

[Furious_Male]

That seems like yesterday. I am getting old. He was a brave kid.

[amvcdotcom]

RIP, Ryan.

[czarina]

jesus, that's so sad! It breaks my heart to read things like this.