"John was a big-time Dad’s boy," recalls Dad, reflecting on the first six years of his son’s life, the years before a disease began stealing his oldest son’s mind. American League umpire John Hirschbeck is sitting in the family kitchen, speaking. At the same time he’s listening for upstairs sounds to tell him young John is awake, though wife Denise is upstairs too. Dad’s feeding Megan, who’s 17 months. He’s watching for Michael and Erin, who are six and four, to come down for breakfast. The Hirschbeck home is filled with activity, vacant of idle time.
__"Ever since he could talk or react to anything, he was always Dad’s boy," he continues, explaining the other children have always been more normal, heading for Mom when something was wrong. Not John. Not dad’s boy. "When I was home I’d always take him to school, pre-school, kindergarten. He was never too upset going to the airport when I’d have to leave, just a kiss good-bye and, ‘See ya later.’ But when I was home, if I so much as went to the store for milk, he’d be right there. He’d be mad if I didn’t take him." The voice tightens, quiets slightly. "We went everywhere together."
__Megan growls for more food and smiles. That growl provides her nickname, "The Beast." She’s beginning to talk, but calls everyone, "Ma-Ma." Seeking recognition, Dad tries to coax at least one "Da." No luck. Erin is the next downstairs. Just a little shy, she hovers close to her father while examining the stranger in the house. Before long she’s addressing Valentines (her pre-school class party is tomorrow), then helping with breakfast. "I worry about her," John admits. "She tends to get shuffled aside. But we’ve told her it’s important to be especially nice to John and she’s been wonderful. Helping, caring."
__Michael arrives only a moment after Erin. With a big smile and self-assured, he’s more interested in a bowl of cereal than in a visitor. Michael is the family sports fan and its computer wizard. Before long he’s pouring coffee for Dad and the guest. "He makes the coffee each morning, a lot better than I make," admits Dad.
__Young John is next into the kitchen, walking slowly and leaning as Denise holds his arm. He sits in a chair next to his father, looking around, indifferent to mealtime. His eyes are the only visible indication of illness, slightly vacant and not quite aligned. Glance at him and you’d never notice that. Michael brings his brother breakfast, Erin a glass of water.
__Denise is already counting pills. Each boy will take several. With a question, she places a small pile before young John. Denise talks directly to young John more than anyone. She makes a point of asking questions that seek answers, then interpreting reactions outsiders might not notice. She is slim and friendly with an easy smile, but not quite comfortable with the visit. There’s little doubt: John decided to do the story so Denise will cooperate, even if it means discussing with a stranger the family’s problems.
__It’s clear that John and Denise are a team. Their home and family offer abundant evidence. The house is decorated in bright, cheerful colors with light wood trim. It is immaculate, despite more than a year of life-threatening illness. How they keep it that way becomes evident, as Michael and Erin automatically pick up after themselves and help with chores. The only concession to the disease: Some rooms remain unfurnished. "There’s no time in our lives," John explains. "No time for each other, no time to sit and talk." Furnishing rarely used rooms is a low priority.
__When they discuss the last year, they simply will not mention death or dying when young ears might overhear. But that’s not a problem as the conversation turns to life then, before diagnosis. Then Hirschbeck mornings were "normal hecticness," typical of a family with four young children. Any parent can remember dishes clinking, cereal on the floor, milk splashed on the table, young voices squealing about school or play.
__Then the umpire’s vacations and winters were extra special. Young John, enthralled by tractors, would beg his Dad to take him to the local John Deere dealership. Their friend the manager would start one of the huge machines and young John would sit in the seat, smiling. A lawn tractor was his Christmas present. "I don’t look back and have regrets that I didn’t do this or that," Dad says quietly. "Maybe that’s made it easier, or will make it easier. I’ll have regrets about the future, but we really did a lot together."
__Now young John is eight years old, 80 pounds. Each morning his father takes him into the shower, holds him cautiously while washing so he won’t fall, brushes his teeth, then hands him out to Denise. Mom hands in Megan, combs young John’s hair and dresses him, then is ready for Megan to exit the shower. It’s an efficient assembly line; it’s parental torture. "You see your son at eight years old and you have to do those things for him," sighs big John. "Not just doing it, but seeing it. Emotionally it tears you apart."
__Breakfast is a little easier. Dad is still feeding Megan and young John’s appetite is good today. "He likes these crackers," big John remarks. He’ll chew and swallow the crackers and pills if you get them in his mouth. He handles the covered drinking glass for himself. It’s almost 11:00 a.m. when breakfast ends. Denise is taking Michael to the tutor’s. John won’t go today. He’s got a cold.
__Michael pours fresh coffee for his father and the stranger as the story begins.

October 1991: Poland, Ohio.
John and Denise Hirschbeck were concerned about their oldest son. In late summer he’d become a little difficult. Not a discipline problem, just not focused on what he was doing. What seemed to be a short attention span was actually the disease kicking in. When first grade started, the problems grew. Numbers, writing, work that before had been easy proved a mystery to young John. His attention span grew shorter, almost every week.
__By December, school counselors, doctors and child psychologists offered a label: Attention Deficit Disorder, a not uncommon problem. The experts found no cause, but suggested medication.

March 1992: Venice, Fla.
Spring training had always been fun for the family. In 1992, John worked a full month of spring games; the kids joined him the last two weeks. But young John’s behavior became bizarre. One day, he found a dead bee, then worried for hours about bees "coming to get me." Another day he stepped on a nail in a new carpet, then walked on tip-toes for hours, terrified it would happen again. He was eased off the medication, but got worse.
Erin and Michael interrupt the story to crawl onto Dad’s lap, interested in the stranger: He examines a tape recorder, she’s more interested in the camera.
__On the last day in Florida, young John was sitting with his grandmother, watching Dad’s game. A little girl behind him asked him his age. He didn’t know. Flying home, his dad remembers a man talking to young John on the plane. "I was sitting across the aisle," recalled big John. "I could hear the man asking questions, trying to be nice. Simple questions, like what grade he was in, where he was going, where he’d just been. He couldn’t answer. We got home that night and called our pediatrician. I said, ‘I don’t know what’s going on, but it’s almost like he’s not my son anymore.’ I remember using that phrase. I said: ‘Please, you’ve got to do something. I want my son back!’"

April 7,1992: Poland, Ohio; Seattle
Hirschbeck’s pediatrician Dr. Lou Brine schedules young John for a Magnetic Resonance Imaging (MRI) test, which will offer a "look" at his brain, as big John flies to Seattle for that night’s AL season opener. Just before game time, Demise calls with the test results. "They found what looks like some spots, some gray areas in the white matter of the brain," she tells John, but also explains that doctors are already saying the MRI film is probably faulty. "She made me feel at ease enough that I could work the game," John remembers. Before it’s over he decides, "I’m out of here." As the AL arranges for a "relief" umpire to fill in, John heads home.

April 9,1992: Akron, Ohio.
Young John’s second MRI is nearly complete. "Everything looks okay," says the technician. "We’ve just got to do one more seven-minute segment." "I thought, ‘Thank God,’" recalls big John. "Then he came back in after the seven minutes." John Hirschbeck pauses as he tells the story, voice choking, eyes misting. "The technician came back and said: ‘Mr. Hirschbeck, I’ve never seen anything like this before. Something is very wrong.’
__"We took the films right over to Dr. Dean Timmons at Akron Children’s Hospital. Timmons just had to look at the films and he knew. He told us, ‘Your son has a very rare .. Another pause; another fight with emotion. a very rare disease called adrenoleukodystrophy (ALD). Then he asked if Denise or I ever had anyone in our families die at a young age. Denise told him about her mother’s brother, who died of encephalitis when he was seven. ‘Bingo,’ Timmons said. When he found out Denise didn’t have any brothers, he was more certain."
__As John and Denise tried to concentrate on the doctor’s words, he explained that ALD hadn’t been named until the early 1980’s; ALD research started only around 1988. He was convinced the 1930’s diagnosis of the disease of Denise’s uncle was wrong, that her mother was a carrier but never realized it, and that Denise and her sister were now unknowing carriers.
__Timmons’ next words could not be tempered. They sliced through the young parents like hot steel: "There is no cure. There is nothing you can do. You have about a year."

Late April 1992: Baltimore
Dr. Hugo Moser is the world’s leading ALD researcher, working at the Kennedy-Krieger Institute at Johns Hopkins University. Moser is the man portrayed by Peter Ustinov in Lorenzo’s Oil, a feature-length movie depicting the efforts of Augusto and Michaela Odone, whose son Lorenzo was stricken with ALD. In the movie, Moser is portrayed as a medical research fanatic who resists the Odonee attempts to treat the disease with an experimental oil. Big John has only heard about the movie, but he knows Moser. "They made him out to be an ogre when he’s the nicest old man you’d ever want to meet. A sweetheart. The movie hurt him."
__It took two weeks to arrange an appointment with Moser. Blood drawn from each of the children was analyzed in Baltimore. They learned more about ALD. The disease erodes myelin, a protective coating that encases nerve endings in the brain. The effect is vaguely similar to stripping insulation from an electrical wire: It leads to a kind of human short circuit, with the brain losing its ability to control the body. ALD attacks only boys; girls are carriers.
__On their third day in Baltimore, John and Denise found a glimmer of hope. John told the story: "Dr. Moser explained there was a very limited chance for John.
__The only thing might be a bone-marrow transplant. He told us it was very borderline, that John might already be too far gone for it to help."
__Unknowingly, John called for more hot steel, asking about the other children. Dr. Moser told John and Denise that all of their children had ALD: Erin and Megan carriers; John and Michael sufferers.
__"I can remember," John confessed. "I hit my knees in front of the doctor. I held his hand. I begged him, ‘No. Not Michael too. I had a year left with John, that’s it. Then to find out... Michael too, and the girls...."

Winter 1980: San Juan, P.R.
Life was exciting for Denise Mann, an Eastern Airlines flight attendant on her first assignment. She had three roommates in "airline housing," living in a beach-front apartment, surrounded by other Eastern employees.
__Watching her eyes, there’s a mixture of pride and pleasure. She seems to be telling the story for the first time in a long while, after talking about sick children and little else for more than a year.
__Erin moves in to discuss what to wear to school tomorrow. "My jeans dress" is the decision as Erin moves off.
__"One day my roommates went for a walk and met American guys on the beach. Umpires," recalls Denise. "But I’d never paid much attention to baseball, so I didn’t know much about umpires. That night I went out to dinner. When I got back there was a party upstairs and six American umpires were there. They’d all been drinking beer, and had quite a bit to drink, having a good time. When I walked in, the room went quiet and I was introduced to everybody." Her smile grows as the story gains, momentum. "It’s funny because John didn’t leave a very good impression on me," she admits, amused and drawing you into the fun. "He’d had quite a bit to drink. One of my roommates asked, ‘Who wants to play backgammon?’ I said I would and she said: ‘Good. John here wants to play.’ I didn’t want to play backgammon with him!"
__In succeeding days, she’d see John on the beach. "I grew more fond of him, I guess. Then he asked me to a baseball game. That was our first date." The courtship was "jet stream" instead of "whirlwind." He was a Triple A umpire; she was building her work schedule his season, hurrying between flights to visit as, often as possible. "It was fun." They married in 1982.
__By 1984, John was in the AL; Denise, pregnant with their first child, was finished flying. They moved to Ohio so she would be close to her parents when he was on the road. Young John was born in October, Michael followed two Octobers later; Erin in August 1984 and Megan in September 1991.
__"We’re homebodies," Denise points out. There’s strength and determination as she leans into the conversation, describing life both before and since ALD. "There are times when I get angry," she admits. "There are days when I just want to go into another room and scream, but I don’t. Something else comes along and I kind of forget about it." You sense she is solid, but wonder where the anger goes. She seems to be the family’s anchor, a mother ready to do anything to care for and protect her threatened children. "We cherish the time we can be home together, especially when John’s not working."

MAY 1992: Minneapolis. Dr. Moser points the Hirschbecks to the University of Minnesota Children Variety Club Hospital and Dr. William Krivit, an expert on blood disorders and bone-marrow transplants. A pattern develops quickly. Five days of each fortnight are spent in Minneapolis. Doctors test and treat John and Michael.
__Physicals, blood work, MRI’s and spinal taps are all aimed at finding a treatment to arrest the disease. There is no known cure.
__After five hospital days, back home to Ohio. The daily grind wears on the family. Each day, John needs more care and supervision. Michael is watched constantly, Is he showing effects of ALD? Is it just imagination? Days run together; hours disappear. Medical bills pile up; no one has time to read them, let alone tally them.
__A short interruption leaves a moment alone with young John. Your smile draws no reaction. His eyes do seem vacant. Whatever happened to the little boy who loved tractors and tools?
__Back to Minnesota. More tests. Another spinal tap. John’s spinal-fluid pressure is off the scale; doctors wonder how he can even stand. Can either boy qualify for a bone marrow transplant? Not John; fluid pressure too high. Perhaps Michael. A donor search begins. Does either girl show effects of ALD? No and none are expected, at least not until they grow older.
__Back to Ohio. The trips blur together. More care for John. More bills. There’s a donor for Michael. The doctors want big John to go back to work, hoping something can be normal for the family, It’s tempting, since there will be a month with no Minneapolis trip. Michael needs rest before his transplant.
__Mary Springsted, AL executive director of umpiring, and Dr. Bobby Brown, AL president, encourage John to work. "All year the league was great," John remembers, They called me all the time to see how things were going. Dr. Brown wanted me to work at least for a while, but he wasn’t pressing me. He just thought it was a good idea. And I didn’t want the season to go by and not have worked under these conditions. How would I be on the field? Would I start crying?"

Mid-June 1992: Richmond, Va.
"Marty sent me to Richmond (Triple A) for three days just in case I couldn’t take it." Talking umpiring makes John’s voice firm, as if he’s slipping into uniform, standing tall. "If I did walk off the field in the second inning of a plate job, who would know If I did that in Boston or Toronto, you’d have every writer in the country on it." Springstead was in Richmond with John, spending the days with him, talking, caring.
__John remembers the trip as relief, going away was… not like I was running away, but it was a break from the stress I’d been under for months." There’s an edge to his words, as if he wishes Denise could have had the same break. The games were no problem until the fast inning of the third nigh, with John behind the plate.
__The plate job was "typical." A rain delay, then more than three hours of baseball. A lopsided game until the ninth, when home pitchers suddenly couldn’t find the plate with a road map. Hirschbeck says it was "like a Bugs Bunny cartoon" with runners cha-chaing around the bases on walk after walk. An eight-run lead was halved with hardly a swing taken. Finally a relief pitcher threw a few strikes and the game was over, but the test just beginning.
__"Brian O’Nora, at third base, called the last guy out on a check-swing," John smiles. "I wind up in an argument with one guy. I might have yelled a little much, but it was the perfect test. I wanted to see if I could keep my composure and I did, even if I got into it a little."
__After a day off, Hirschbeck was back in the AL, joining Rich Garcia’s crew and working almost a month. The All Star break brought John back to harsh reality.

July 14,1992: Minneapolis
As baseball plays its annual mid-season exhibition, the Hirschbecks take refuge at the Minneapolis Hyatt. It’s become a familiar oasis during the many treatment trips. Now it will be home for three months and three days — Michael’s transplant is at hand. Denise, John and John’s mother ease into a system: A day "on," a night and a day "off," a night "on." Someone is always at the hospital with Michael. The shifts will last for 58 days.
__Ten days of chemotherapy steals Michael’s hair; it should help his body prepare for the transplant. Next a brief "rest" period to insure the chemo will not attack his new marrow.
__A decision is needed: Two donors match Michael; Megan is one, someone outside the family is the other. Doctors explain that sibling donors usually mean fewer problems with GVH, graft-versus-host disease. If Megan provides the new marrow, Michael’s body is less likely to reject the transplant. But Megan is an ALD carrier. The transplant might offer no cure. John and Denise decide the doctors will use Megan. Their best hope: Michael will be rendered an ALD carrier, like his sisters, instead of a victim, like his brother.
__On Sunday before the transplant, John and Denise are alone with Michael. They explain what will happen. It’s all to keep him from getting sick like his brother. Michael knows he’s sick. He sees what’s happened to young John. Michael is nervous, actually shaking. Denise speaks softly, "Michael, it’s okay if you want to cry." He breaks down, sobbing. "There we were," John recalls, "telling him we’d be there with him. All the time we had no idea what he was in for. That will tear your heart out."
__The transplant is actually four procedures. All go well. Next is a two-week "honeymoon." Doctors explain the third week is critical. That’s when GVH problems usually set in. Michael suffers severe stomach problems, but slowly recovers. By Sept. 2, recovery seems well underway. A month after the transplant, Michael is still hospitalized but progressing. That night big John is with Michael, sensing that something’s not right. At 9:00 p.m., a nurse is called, but everything seems fine.
__Two hours later he asked his son a question, but got no response. Michael was staring vacantly out the window. More questions. "Michael, answer me!" No answer. His thumb started twitching. Suddenly his whole body is trembling. An instant later Michael is in the throws of a grand mal seizure. "I remember standing in the corner," says John, "shaking myself as 12 or 13 doctors and nurses worked on him. I remember thinking, ‘I’m going to stand her and he’s going to die right before my eyes. My God, please, no!’
__"Seeing your kid go through the chemo, losing his hair, knowing he’s never going to have children; that his risk of cancer when he’s in his 20’s is high; seeing him go through that kills you as a parent. But when you see that kind of seizure...." The medical team persevered. Somehow, by morning Michael was fine.

Mid-November 1992: Minneapolis
Another trip to the hospital. It’s Michael’s three-month-transplant checkup and he’s doing well. His brother is now on the transplant list and there’s a donor. But doctors have little hope for young John. He’s losing control of virtually all bodily functions. They think he’s just too far gone. When the donor tests positive for hepatitis, little hope becomes no hope.
__Back home, John and Denise take young John off his strict diet. Since the diagnosis, they’d been looking for a way to spoil their oldest son. . "Now the things that make good times aren’t the things that make good times for most people," big John explains. "Seeing John enjoy eating something is one good time. He gets excited over having pizza or ice cream."
__"I remember," John says in response to a question, "I used to tell our priest, ‘I’m the luckiest person in the world. I’ve got a great wife, four beautiful kids, a job I love. I have everything. It scares me.’ I’ve tried not to, but sometimes I get mad at God. I feel anger over all the things John won’t be able to do, to experience. Then I get out of that anger period and I apologize. Maybe He’s sparing John something later in life. You don’t know what the future would have held. I haven’t come to terms with that yet."

Decemiber 5,1992: Baseball’s Day for the Hirschbeck Family, Chicago.
Young John is "going downhill." It’s noticeable every day. He’s strong enough to be in Chicago, but not healthy enough to really know why.
__The event lifts the unofficial news blackout. Writers from around the country each tell enough of the story to spur attendance and monetary contributions. Dozens of superstars, recruited by Oakland manager Tony La Russa and White Sox manager Gene Lamont, attend to sign autographs, take photos and auction momentos. The effort raises more than $250,000, which only dents the growing, untallied medical bills.

March 1, 1993: Venice, Fla.
Can it really be only a year since the last spring training? John, Denise and the children are back in Florida, preparing for the baseball season that is likely to outlive young John.
__Before going south, John and Denise made funeral and cemetery arrangements, knowing their son may not survive another three months.
__Saturday night, March 6, young John is very ill. He cannot sleep; can hardly breathe. He’s running a fever higher than the thermometer can read. John and Denise put him into the bathtub to lower his temperature. Constant phone calls keep doctors informed and advice coming in. By 10:30 Sunday morning, the crisis is over and young John is calm; Denise tells big John to go to work. But moments before leaving he asks neighbor Tim Welke, a close friend and fellow AL ump, to take the game.
__Through the day young John rests, but by 7:00 p.m. he’s worse. "His eyes started getting a little glassy," his father recalls. Tears seem but a moment away as he tells the story. "We were holding him, lying on the floor because he was more comfortable that way." One by one, the family joined together. One big hug, seeking contact, trying to will young John through another crisis. "And then..." tears well in Dad’s eyes, "... a couple last breaths. I just knew. The next moment …. he did one more breath and just died, right in our arms."

April 10, 1993: Chicago
A week into the baseball season John Hirschbeck sits in a hotel room and talks of a parent’s worst nightmare. It is one year and one day since young John’s ALD diagnosis. The magazine story is almost complete.
__Michael is with his father this trip, visiting friends he made in December. Ignoring the conversation, he pours coffee for his Dad, then sits down alone to play cards. He’s become fascinated with solitaire.
__"Michael is taking it real hard. The other two don’t realize. Megan is too young. Erin has asked Denise when John will be back." When talk turns to umpiring in the season still ahead, his voice again gains strength. "On the field, I don’t see a problem. I haven’t had trouble concentrating. But the hardest part this season will be the free time."
__Young John’s last days were hard on the family, he says. "There was nothing. He didn’t recognize me or Denise. To go on like that.... We would have cared for him forever. But to have him on life support.... I believe he’s in a better place now."
__"A friend of John’s summed it up the best. He’s eight too. He said, ‘John didn’t live long, but he sure had fun.’"

__For the first time in front of this stranger, John Hirschbeck’s tears flood from his eyes. You know that in his mind a small boy is sitting on a tractor, smiling and bouncing on the seat.

Dad’s Boy