Adrenoleukodystrophy

How do you survive the death of a child? How do you go on knowing another child shares the same genetic disease? When you've traveled umpire John Hirschbeck's journey, being spit upon is just a footnote

The boy loves games of chance. He loves slot machines and playing cards and instant-win lottery tickets. He learned at an early age to count coins, and to bet them. He learned in the hospital that money comes in get-well cards.

Michael Hirschbeck learned to play gin in the hospital, too. His father taught him, during the long weeks of waiting, between the chemotherapy and bone marrow transplant and seizures and pneumonia and days when he was too sick to even eat a cup of ice chips. He never asked a lot of questions, even the day his parents told him he had the same disease as his older brother, who was already dying, and that it would take his baby sister's bone marrow to save his life. He was 5 years old.

"If you want to cry, it's OK," John and Denise Hirschbeck told Michael, and he did, and so did they.

They didn't tell him he was only the 18th child with this disease to have a bone marrow transplant; or that his baby sister was a carrier of the disease; or that the doctors had anguished over whether the sister's tainted marrow would help him.

They didn't tell him it might be too late to save his brother.

That was 1992, the summer Michael learned to watch baseball on television like the grown-ups do, patiently and for hours, while recovering from the transplant. That was the fall he watched the World Series with his father, the American League umpire who stopped working when his sons got sick. People might think the worst thing that ever happened to John Hirschbeck was getting spit on by Orioles second baseman Roberto Alomar during a game last season. But it wasn't, not even close. When the worst thing happened to Hirschbeck, when his children were diagnosed with a deadly neurological illness, he was thankful for baseball. Not just for the season off, or the fund-raiser where famous players sold shirts and signatures to help pay medical bills--but for that simplest of baseball pleasures: games to watch with his son.

In the hospital, the Hirschbecks also played a game called Trouble. In Trouble, you use a die to move colored pegs around a board; when your peg lands on the same space as someone else's, it's trouble.

The game was Michael's favorite.

The object was to get home safe.

BROTHERS

Everywhere the older brother went, the younger brother followed.

John Drew Hirschbeck was born in 1984, Michael two years later; they were October babies with birthdays two weeks apart. They played video games and basketball and ran in the woods and rode bikes together. "If John was at our door, Michael was right behind him," said Joanie Ramson, whose son, Johnny, was the older brother's best friend. "I can remember Michael coming down the street with one training wheel on his bike, trying to keep up with them."

The Hirschbeck boys shared. They shared the love of their mother and father and younger sisters. They shared a big bedroom in a warm, tidy house in Poland, Ohio. They shared a mutated gene, passed silently from grandmother to mother to children, silently because it didn't kill girls, silently because it is so rare few people have ever heard of it. So difficult to say that it goes by initials: ALD.

"Adrenoleukodystrophy?" a librarian once asked Denise Hirschbeck. "You don't want to know about it."

The Hirschbeck boys were close, close as brothers could be, and yet they were different. John's eyes were blue, Michael's brown. John batted lefthanded; Michael batted right. John was the first child, the one with his father's name, the one who sat on a bar stool, drinking milk while daddy drank beer.

Little John, they called him. Little John, who memorized country songs and banged up a storm with his miniature tools and laughed so hard he made you laugh, too. Little John had a steam shovel on his birthday cake and was going to drive John Deere tractors when he grew up. His parents smiled. "Why don't you do real good at something else and I'll buy you one," said his father. Little John could do anything. He was smart and adventurous and happy and healthy.

And then, mysteriously, silently, he wasn't.

The trouble started at school. In first grade, John had problems paying attention. His writing looked shaky, and he'd lose his place in his work. The doctors prescribed medicine for attention deficit disorder, but nothing changed. Spring training came, March of 1992, and on the family trip to Florida little John seemed confused and frightened. Once he saw a dead bee and thought bees were coming to get him. A stranger asked his age, and he couldn't answer.

He was 7.

The next month, he had a brain scan. The day the results came back, Denise called the umpires' locker room in Seattle. It was April 7, 1992, the night of the American League season opener, Mariners vs. Rangers. John Hirschbeck was getting ready to walk out to the field; he was working third base that night.

There are spots in his brain, Denise told John. White spots, where there should be gray.

After the game, the umpire flew home. The next day, when his oldest son disappeared into an MRI cylinder, John held tight to the boy's foot. The diagnosis was ALD. A year to live. No cure.

But there had to be something. John and Denise flew to Baltimore to talk with Dr. Hugo Moser, a renowned ALD specialist. The white-haired doctor with the German accent told the Hirschbecks about experimental treatments, including a restricted diet and a special oil. Moser also said there was a doctor in Minneapolis who did bone marrow transplants. A transplant might give John's body the enzyme his faulty gene couldn't produce--the enzyme that would keep toxic fatty acids from damaging his brain.

John and Denise Hirschbeck sat side by side in Moser's office at the Kennedy Krieger Institute, where blood samples from their four children--two sons, two daughters--had already been shipped and scrutinized. It was early in the conversation, and Moser hadn't yet told the Hirschbecks the most terrible news. It wasn't just John. Their daughters, 3-year-old Erin and baby Megan were ALD carriers. Even worse, Michael, their 5-year-old, had the same disease as his brother. But before Moser could broach the subject, John broke in.

What about the blood work?

Years later, Moser would still remember how the umpire cried. How he sobbed, inconsolable. How he held the doctor's hand and begged him to say it wasn't true, that he wasn't going to lose both sons, not John, not Michael, too.

FAMILY MAN

I'm the luckiest man in the world. Isn't that what John Hirschbeck had told his priest? Four healthy kids, beautiful home in a comfortable town, umpiring in the big leagues, a great marriage.

She's the easygoing one, they agree, and he has the temper, but in many ways John and Denise Hirschbeck are the same. They met on a beach in Puerto Rico--she was a flight attendant, he was working winter league baseball--and were married two years later. "The right hand and the left," a friend calls them. They are happier sitting by the fireplace or playing with their kids than going out at night. They treasure their privacy in Poland, the small Midwestern town where Denise grew up. The Hirschbecks are generous with their children, affectionate and protective. They often speak in unison, her sweet, crisp voice blending with his deep one.

The disease, the doctors told them, was tough on marriages. How could it not be? You wake up in the morning and what is there to be happy about?

John: "People would say, `Well, you two need to go out to dinner.' But what are you going to talk about at dinner? `How's Michael doing today?' Well, his hair started to fall out from chemo, and he's on new medication. `What about John?' I'm not sure if he's seeing the same or if he's having trouble swallowing now. Did we get to the cemetery? Did we get the plots picked out? Nothing's happy. Nothing. You wake up every day, every single day, with that sick feeling just wrenching your stomach."

The man didn't just love his sons, understand. He admired them. The way little John enjoyed every minute of life, every tractor-riding, Pee-Wee baseball-playing second. The way Michael took things in stride that would tear apart most adults.

Sometimes the umpire was in awe of Michael's guts. Sometimes he wished he lived every day to the fullest as much as little John did.

TESTS AND MORE TESTS

Everywhere the older brother went, the younger brother followed. In the spring of 1992 they went to a hospital at the University of Minnesota, home of a pioneering children's bone marrow transplant program.

Every other week the Hirschbecks would make the 800 mile trip to Minneapolis, first for John's tests, then Michael's, then John's again. Michael showed no symptoms, but John, already disoriented and confused, was getting worse quickly. His mom would ask him to go in the basement and get something, he'd forget where the basement was. "He'd have such a troubled look on his face," said Mary Ina Jones, his maternal grandmother. "He looked at you as if to say, `Help me, I don't know what's going on.' And you just put your arms around him and said, `You're going to be OK, God loves you, and we're taking care of you.'"

John and Denise wanted little John to have a bone marrow transplant. It wouldn't be a cure, the doctors warned--just a way, maybe, to keep the disease from progressing. But there was a complication. Little John had too much pressure on his brain; plans for a transplant were put on hold while doctors prescribed drugs to reduce it. The umpire buried his head in his hands. "My son is going to die," he told a friend.

Denise, armed with medical books and donor registry statistics, kept after the doctors. When can John have a transplant? she begged them. If not now, when? John was the confident older brother, Michael the tag-along puppy, but all at once, in the summer of 1992, everything changed. It was Michael whose body was strong enough for a transplant, Michael whose sister Megan was a genetic match, Michael who slept while marrow dripped through a tube into his body. In the hospital, John visited his brother and hung back, transfixed by the sight of Michael's bald head and puffy face. "You're going to have a transplant too," Denise told John. Back in the hotel room, she assembled a makeshift kitchen to cook the low-fat foods recommended to fight John's disease. She plugged in an electric skillet to make chicken breaded with fat-free cornflakes. She scrubbed dishes in the bathroom sink. She lost 15 pounds, because how could she eat food that her son couldn't?

It was Michael who got the transplant, but even that was a risky bet. The doctors had faced a choice between two donors: Michael's sister, who was an ALD carrier, or a stranger, whose marrow was more likely to be rejected by Michael's body. The first choice might not stop the deadly disease; the second might kill him anyway.

That was the summer Michael learned to love games of chance, the summer of cards and chemo and IVs and Trouble. Even with his sister's marrow, the side effects of the transplant were brutal: Mark Hirschbeck, the uncle whose visits usually perked up Michael's spirits, could see the nervousness in his nephew's eyes. "He wouldn't let on to anybody," said Mark, who is also a major league umpire. "But I knew it was bad when he said he was too tired to play with me." Sometimes the only thing Michael felt like doing was lying in bed and watching baseball Not cartoons or movies; Michael preferred baseball.

He stayed in the hospital so long that by the time he got home, baseball season was over. His face was still swollen and his hair was still patchy, but it was little John whose eyes were vacant, who wore diapers and needed help walking. Michael didn't shy away from his brother. He sat by little John's side for hours, stroking his arm and holding his hand. Like a nurse, thought his father.

John and Denise never stopped trying to save little John. To respect his dignity, they kept him shielded from gawking well-wishers. But he never missed an appointment with his tutor, even when his father had to pick him up and carry him to her office. John had been working with Patti Preston since first grade; for months they'd sung his favorite songs and read stories and colored pictures. Preston never gave up on little John, either. But eventually he could no longer sing, and he could only make a few strokes with the crayon before dropping it. One day his father called Preston in tears; they weren't coming anymore.

"John was disappearing," said Preston. "It was like his whole person just disappeared. John would say to little John, `I love you. Your daddy loves you.' I would say it, too. `I love you, John.'" Sometimes, there was nothing else to say.

John Drew Hirschbeck died on March 7, 1993, 11 months after being diagnosed with ALD, a week after his parents took him to their Florida condo for the family's annual spring training trip. His father had been scheduled to work a game that day, but little John's fever spiked and his breath slowed and his parents could do nothing but cradle him in their arms until he was gone. He was 8 years old.

Back in Ohio a few days later, at the burial, Michael stood close to his Uncle Mark, John Hirschbeck's younger brother. Who better to comfort a little brother than another one?

In the chilly Poland cemetery, 6-year-old Michael spoke aloud to his big brother. "I'm gonna miss you, John," Michael said. When he turned to hug his uncle, Michael was crying.

"We won't have to miss him," said Uncle Mark. "He'll always be with us."

His parents had little John's picture etched on his gravestone--a picture taken in kindergarten, so his eyes would be bright--and next to his small stone, they placed a larger one, a stone with their names on it.

They didn't want to leave him there alone.

THE RELIEF OF WORK

Try to work, people had told John Hirschbeck in the idle weeks before Michael's transplant. But the umpire worried: How do you work knowing your sons have a fatal disease? What if he started to cry, walked off the field, couldn't take it? So he went to Richmond, Va., a minor league city, and worked three games to test himself. Then he spent three weeks back in the majors and discovered it felt right to be working again. Sometimes, it was even a relief, focusing on nothing but pitch after pitch after pitch. Keeping control, an umpire's job.

Except for those few weeks before Michael's long stay in the hospital, John Hirschbeck spent the better part of a year away from baseball. Now it was spring of 1993, a week after his son's funeral. It was time to go back.

"I never wanted people to look at me and feel sorry for me, or say that, `He's not the same umpire he was because of what he's gone through,"' he would say later. "Everything in the world that I had was because of baseball. I felt I had built up this reputation--that the guy works hard, and he hustles, and he cares about what he does--and it meant a lot to me. I didn't want to lose that. On the field, nothing would get to me. That's the way I looked at it. I had 21 hours a day to think about John, and for the three hours that I worked, that was going to be baseball time. I'd worry about handling John's death the other 21 hours."

Those first three hours came during a spring training game--White Sox vs. Yankees--in Florida. Hirschbeck was supposed to work third base. But if he was going back to work, he was going all the way. He switched to home plate, the more visible and challenging position. Before the game, managers and players came up to the plate to welcome him back. There was Buck Showalter, Wade Boggs, Don Mattingly and others, all shaking his hand and telling him they were sorry. The umpire had tears in his eyes. How could he not be thankful for baseball?

But the first year back was hard. There were long hours of down time, hours to think and hurt and remember. On the road away from Denise and Michael and Erin and Megan, he learned which friends he could talk to during those 21 hours and which were tired of listening. He learned that unless you've buried your child, you can't know how it feels.

It was before a game in Baltimore the summer after John died that Hirschbeck sought out Tim Hulett, the Orioles infielder whose 6-year-old son Sam had been hit by a car and killed the year before. "I just remember thinking I wanted to talk to him," Hirschbeck says.

Hulett, now the athletic director of a Christian high school in Springfield, Ill., remembers, too. He remembers listening to Hirschbeck's story in a private room in Camden Yards. He remembers thinking that as painful as losing Sam had been, the Hirschbecks' agony must be many times worse. It wasn't just that they'd watched little John disappear before their eyes. It was that Michael had ALD, too.

The bone marrow transplant could keep Michael's disease from progressing, but only time could tell how healthy he would be. The first year after the transplant Michael was relatively well. Relatively: He was taking 30 pills a day, bred easily and developed shingles, a painful skin condition. But then, on a hot August day before first grade, Michael collapsed while playing at his grandmother's house. It was a brain seizure--the first of many to come, each another frightening symptom of the disease that killed Michael's brother. The seizures were powerful. Sometimes they put him in the hospital for days. Sometimes they blurred his vision and robbed his memory.

Was Michael going to be OK? That was the question the Hirschbecks lived with every day They could fly to Minneapolis for checkups; they could read the case studies of ALD boys who had thrived after transplants. They could listen to the confident voices of the doctors, saying the MRI images of Michael's brain were unchanged, that the boy was making slow but steady progress every year.

But they could also see Michael struggling to read. They could see the lapses in his short-term memory. They could see him missing so many days of school that he had to repeat first grade. They could see that his MRIs were no worse, but no better.

Was Michael going to be OK? For the Hirschbecks, the answer was always the same:

We don't know.

But the umpire promised himself: On the field, it wouldn't get to him. On the field, no one would know. The promise was tested during the 1995 World Series, Hirschbeck's first World Series in 13 years as a major league umpire.

Three years had passed since Michael's transplant. By October of 1995, Michael was taking high doses of powerful anti-seizure medication--and now there were other problems. The boy who loved to eat was getting skinny and had no appetite. He was increasingly agitated, confused and disoriented. Normally polite, he stared blankly at family friends. The night his father worked home plate in the fourth game of the World Series--a series that pitted Cleveland, Michael's favorite team, against Atlanta--Michael didn't even seem to care. He stayed in the hotel in Cleveland with his grandmother while his mother went to the game. Michael, missing a baseball game, let alone a World Series game that his dad was working? Never in a mullion years. It was like his whole person just disappeared.

Denise didn't want John to be alarmed; these were the biggest games of his life, she knew. But, of course, he saw what was happening. "Let's just get through the Series," he told her. "Then well be home."

He concentrated. He focused. One pitch at a time, he got through it. Atlanta beat Cleveland in six games. And Michael's symptoms turned out to be a reaction to the powerful seizure drugs. The worries didn't end--but the crisis did.

Last baseball season was the umpire's fourth since Little John died. Every day off he went to the cemetery in Poland. Every game day, he carried a pager, in case Michael got sick. On special occasions, he took Michael to his games. "I m going out on the road," Michael would tell Patti Preston, who'd been little John's tutor and was now his.

On the road, Michael came into his own. He was the brown-eyed charmer who beat the umpires at gin and helped them prepare the baseballs by rubbing them with mud before games. He shook hands with strangers and chatted with Kirby Puckett and politely told umpires "good game" after they worked. His father always got him seats behind the screen, where no foul ball could hurt him. Michael watched the games, but he also watched his father--the umpire with silver initials on the back of his navy hat. JDH.

John Drew Hirschbeck.

When Michael went on the road, his brother did, too.

BACK IN THE GAME

After the transplant, it was a while before Michael felt well enough to play with other kids again. When he did, the first person he thought of was his brother's best friend.

"Can I call Johnny?" he asked Denise.

Johnny Ramson knew Michael had the same disease that killed his brother. Johnny's mother had told him that a bone marrow transplant was going to save Michael's life. Even so, Johnny kept an eye out for Michael. Sometimes, while they were playing, he told Michael to slow down and take it easy.

Playing with Johnny helped Michael go on with life. PLaying baseball did, too. The doctors warned that sports might be difficult for Michael--ALD had left him with blind spots in his vision, and he was prone to overheating and seizures. But how could Michael not play pee-wee baseball? He loved it so much that he'd joined his big brother's team a year early, at age 5.

After little John died, John Hirschbeck devised a plan to make sure Michael--who'd already lost so much--wouldn't lose baseball. John would anonymously sponsor Michael's pee-wee team and pick his own coaches, dads who would understand Michael's weaknesses and encourage him.

Dads who would understand the double meaning of the team's name: John Deere.

Playing baseball, Michael was just like any other kid. He was a strong boy, a righthanded pull hitter, a team cheerleader who occasionally had to be told to stop singing "We will, we will, rock you" while his team was losing. Other boys got distracted during games--digging in the dirt or playing with a bug. But Michael's attention never strayed.

The effects of his disease meant that Michael sometimes misjudged balls in the field, and he couldn't always make contact at the plate. A few times, he had a seizure the night before a game. But the next day, he'd come downstairs with his uniform on, ready to play.

Denise: "I can picture him right now. He goes running up to the plate. He's got that little smile and he gets in his stance and he's so excited, beaming from ear to ear."

John: "If he strikes out, he just runs back and sits down. I see other kids cry and get upset. But he just sits and puts his helmet down. He would never think of slamming his helmet. He just sits there like a big-league ballplayer would."

Usually, big-league players wear the same numbers on their uniforms every season. But after John died, Michael wore a different number every year. He liked to wear the age that John would be, if he were on the team.

ANOTHER SEIZURE

In September, Michael was in a Minneapolis hotel room, getting ready to go to a baseball game with his dad, when a seizure hit him. He felt the familiar dizziness before the left side of his body stiffened. His eyes went blank. The phone rang, but Michael, sprawled in a chair, didn't move.

"Michael, would you get the phone for Dad?" John Hirschbeck called from the bathroom.

But there was no answer.

The umpire ran to Michael's side, and in the dazed empty eyes he saw it again: The reason he carried a pager everywhere he went. The reason a phone ringing during the school day could make him jump. The reason a blank stare at the dinner table induced panic--even though the doctors said Michael had been steadily improving for several years. In Michael's eyes, John Hirschbeck saw the question, and he saw the answer:

We don't know.

Hirschbeck tucked Michael in bed. The seizures usually passed quickly, but they left Michael shaky and exhausted. A mile away, at the Metrodome, workers were preparing the field. Seattle was playing Minnesota, a Sunday afternoon game, and Hirschbeck was scheduled to work the plate. He had promised himself: On the field, it wouldn't get to him.

For a while, Hirschbeck watched Michael sleep. Then, after an hour or so, he carried his son to the ballpark. Michael was still too tired from the seizure to watch the game, so a bed was fashioned from towels and blankets on the carpeted floor of the umpires' room. While his father worked, Michael slept. The clubhouse manager woke him up once for medication, but he drifted off again. Jamie Moyer, a Mariners pitcher who wasn't working that day, looked in on Michael four or five times and flashed Hirschbeck the thumbs-up sign from the dugout between innings.

At one point, Ken Griffey Jr. came up to bat for the Mariners. Before he stepped in the box, he spoke to the umpire.

I just saw Michael, and he's still sleeping, Griffey said. He's fine.

Thanks, said Hirschbeck, crouching down for the next pitch.

THE BIG LEAGUES

Everywhere the older brother went, the younger brother followed.

John and Mark Hirschbeck were the first brothers in history to umpire at the same time in the major leagues. John, the older brother, went to umpire school first; Mark, six years younger, chose the same career as his brother.

Today, John works in the American League; Marks works in the National League. Like most umpires, the Hirschbecks are seldom the focus of the game. And when they are, it's usually because people disagree with them.

On September 27, in a dispute over a called third strike, John Hirschbeck ejected Roberto Alomar from a game against Toronto. During the argument that followed, Alomar spit in Hirschbeck's face. Afterward, the second baseman tried to explain what he'd done. "He had a problem with his family when his son died," Alomar told reporters. "I know that's something real tough in life, but after that he just changed, personality-wise. He just got real bitter." The next day, after hearing Alomar's words, Hirschbeck charged into the players' clubhouse, threatening to kill Alomar. He was restrained by another umpire and sat out that day's game.

In the weeks after the spitting incident, as the story continued to make headlines, Mark Hirschbeck worried about his brother. He called John three and four times a day, just to check on him. He stood up for John, telling a reporter that Alomar's five-game suspension was too lenient.

The suspension was set for spring and allowed Alomar to play in the postseason; the Orioles went on to face the Cleveland Indians in the division playoffs. The series featured a matchup of brothers: Roberto Alomar playing second base for the Orioles, his older brother Sandy Jr. catching for the Indians.

On October 5, after being booed at each at-bat in Cleveland, Roberto Alomar hit the winning home run for the Orioles, sending Baltimore to the American League Championship Series. After the game, Sandy Alomar Jr. went into the visitors clubhouse to see his little brother. Sandy Jr. hugged Roberto and touched his face. The second baseman cried.

Seventy-five miles away, in Poland, Ohio, Michael Hirschbeck was absorbed in the playoffs, which he watched as much as he could on television. His mind didn't wander. His eyes stayed bright. During the day, he played cards and went to school with his sisters. At night, he slept in the bedroom he used to share with his brother.

BUYING TIME

Four and a half years after his transplant, Michael still loves games of chance. Last Christmas he got his own Las Vegas-style slot machine. If players bet with their own quarters, they can keep the winnings, but if they bet with Michael's quarters, the jackpot is all his.

On October 23, in the middle of the World Series, Michael celebrated his 10th birthday. When his grandmother, Mary Ina, asked him what he wanted, he said: "You know, Grandma, I really have all the things I want." So she made him a money tree. It was a white branch dangling with rolls of quarters and silver dollars and instant-win lottery tickets. He loved it.

But he didn't scratch off the tickets right away, his grandmother noticed. He tucked them in his wallet, to save for later.

The bone marrow transplant bought Michael time--a lifetime, his parents pray. Every year Michael does better in school and has fewer seizures. Every year his parents get on their hands and knees and do more work at little John's gravesite. Near the end of last baseball season, they planted a red maple and two weeping hemlocks.

"Everybody tells us that as time goes on it gets easier," says Denise. "I don't find that it gets easier. Holidays are hard. Birthdays are hard." "Every day is hard," says John. "Every day.

Don't let a dead child be forgotten, says the newspaper column on the refrigerator in the Hirschbecks' sparkling kitchen. The kitchen is the center of life in their house, where breakfasts are gulped and spelling words are learned and medication is doled out along with the hugs. There are six seats at the table, and one of them will always be little John's. Maybe someday John and Denise will sit 8-year-old Erin and 5-year-old Megan down at that table and explain to them what it means to be ALD carriers--that ALD could affect their health when they are older, that they could pass the disease on to their own children.

But John and Denise aren't worrying about that yet. They have enough to think about.

Michael is in the third grade now. He takes eight pills a day in school, he watches the clock and quiet;y excuses himself at medication time. Because of his vision, he gets his classwork enlarged, and every day he leaves the room to see a tutor. He recently came home ecstatic, with his first perfect report card.

In private, there are times when Michael cries. "I miss John," he tells his mother. But the odds are, if you ever get to meet him, Michael will shake your hand and beam. When you say goodbye, he'll hug you long and hard. When he laughs, he'll make you laugh, too.

And if you ask, he might even give you a tour of his bedroom.

This is some of John's stuff. Some of it is mine, but some of it is his. Here's my piggy bank, and it's an filled with quarters. Here are my baseball cards. I love to collect baseball cards. I love anything baseball. Lofton and Belle are like my top cards, and baseball's like my top thing Someday when I'm older I can show my kids I have these cards to look at Some are to look at, and some are to put away. I got all my cards sorted. If I want to know if I have a certain card, a Roberto Alomar card, let's say, then I can look under the Orioles and then I could find it.... That bed should have been my brother's.... I have the biggest room, because it should have been my brother's too, but he got sick and he died. ... Here's his picture.... John's in our family, but he's just not here. He's our angel.

RELATED ARTICLE: An update

Striken with ALD, the same disease that killed his brother, Michael Hirschbeck, 10, continues to fight for his health. We're happy to report that Michael's status has not deteriorated since Lisa Pollak's Pulitzer Prize-winning story on the Hirschbeck family was published December 29.

"Basically, Michael's condition remains the same," says Denise Hirschbeck, his mother, "We go back to Minnesota for another checkup in June or July. We took him there in January, and this next visit is really just to repeat certain areas of testing that he had back then. They want to see if there might be any changes. So for the most part right now, his condition drastically new."

The Hirschbecks will schedule the checkup at the University of Minnesota around a time in the next couple of months that will permit Michael's father, John, to join him in Minneapolis.

Lisa Pollak is a feature writer for The Baltimore Sun.

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