By Nina Ahn Photographs by Eric Sueyoshi
Tucked away from the street, across from a large Korean market sprinkled with graffiti, is a small oasis in the familiar urban chaos of Los Angeles’ Koreatown. Reminiscent of an Italian deli crossed with a smart French café, Banchan a la Carte exudes a subdued sophisticated air with its long, glass enclosed deli counter, marble-topped tables and patio herb garden.
Inside, owner and chef Jayne Chang peeks over her employees’ shoulders and instructs them to cut the vegetables thinner or use less salt. She beams with pride as she walks around the restaurant she opened in June, describing in soft, accented English the colorful array of Korean banchan, Asian fusion dishes, and American-style rotisserie meat and sides displayed behind a glass case. Down to the neatly-tied bows on the boxes of assorted dried seaweed, she feels responsible for making sure every detail is perfect.
Chang, who also founded California Premier Culinary School in Los Angeles (which offers professional and amateur classes in Korean, Asian fusion, and European cuisine), wakes up early every morning to drive her two children to school, makes a stop at the culinary school, and then puts in a 12 to 14 hour day at the restaurant. She spent a year-and-a-half meticulously preparing the launch of Banchan a la Carte, located on Western Avenue, near Beverly Boulevard, and now the two-week-old restaurant sparkles.
Originally conceived as a catering business, Chang, who is allergic to MSG — a common food additive in Asian foods — saw a need for a healthy alternative to the preservative-laden Korean food found in markets and other restaurants. Because she wanted people to have more opportunities to eat healthy food, she eventually decided to add a dine-in menu and an extensive to-go deli.
“But,” says Chang, 43, “there are a lot of Korean people [who] said maybe this concept is not right for Koreatown.”
According to Chang, some Korean restaurants actually sprinkle MSG on their kalbi before serving it and most of the ready-made banchan and kimbap at Korean markets are filled with preservatives. In an area saturated with Korean restaurants and markets offering a plethora of choices to satisfy even the pickiest palate, Chang knew it would be difficult to convince consumers to pay more for healthy versions of such Korean staples.
“If I [said] I’m using natural beef and free-range chicken, [they ask] why I don’t use regular [meat] and have a cheaper price,” Chang says with a laugh.
She also says her version of Korean food is more delicious. As she points to her chefs rolling kimbap in the kitchen, she explains how danmuji, the round, yellow radish — a standard in kimbap — is artificially colored and preserved. Her brown danmuji, however, is hand-cut and julienned, then brined in soy sauce, giving it a fresh taste.
So far, the concept has gone over well with busy, career-oriented customers who are looking for quick and healthy meal options — most of whom tend to be 1.5- and second-generation KAs. For the curious but wary patrons, Chang makes sure to spend time walking them through her culinary point of view and its benefits.
Over the last month, business has been picking up, especially during the lunch hour and just before dinner when people stop by to pick up yukgaejang, seasoned cuttlefish, or chilled cups of sikye on the way home.
“Customers are coming back after their first visit,” notes Sunny Kim, a Banchan employee.
As the positive feedback trickles in, Chang’s anxieties have started to dissipate.
She insists, “Korean people deserve this kind of place.”
Chef Jayne’s Red Snapper with Perilla Leaves
A classic friedfish with a gourmet twist
Ingredients:
• 4 snapper fillets
• 4-6 perilla leaves
• 1/2 cup all-purpose flour
• 1 egg
• 1 cup bread crumbs
• oil for frying
• salt and pepper
Directions:
Cut fillets in half lengthwise and place perilla leaves in between. Season them with salt and pepper and dust with flour. Dip the fillets onto the egg mixture and then into the breadcrumbs. In a heavy pan, heat oil, then fry the fish until golden brown. Serve with tartar sauce.
Spicy Tartar Sauce:
• 1/2 cup mayonnaise
• 2 tablespoons dill pickles, finely chopped
• 2 tablespoons onion, finely chopped
• 2 tablespoons celery, finely chopped
• 1 tablespoon chili sauce
• 2 teaspoons lime juice
• celery seeds, optional
By Michelle Woo Photographs by Eric Sueyoshi
On the proverbial road to stardom, Aaron Yoo is riding in the fast lane. A quick glance at his schedule shows appearances at screenings in Tokyo, red carpet interviews at the MTV Movie Awards, a string of promotional photo shoots, and, of course, all those after parties. And that’s just this week.
Fortunately, KoreAm was able to squeeze into the lineup after some back-and-forth with his people, who finally told him where to be and when to be there.
“Yeah, it’s obnoxious,” Yoo says, sitting outside a natural foods market in Los Angeles. “There are, like, 10 people on the e-mail list [that sends me my schedule] — agents, assistants, my manager, my publicist. I’m exhausted. I have no personal life. But I have to remind myself, ‘No, you can’t be tired. This is the stuff you dreamed about as a kid.’”
It’s been a dizzying year for the 27-year-old rising celeb, recently called “the most famous actor you’ve never heard of” by E! Online. He’s splashing his mark on the silver screen, playing the hormone-charged Ronnie in the hit thriller “Disturbia” and the saxophone-blowing Lyle in “American Pastime,” a home video release about a wartime family that is uprooted to a Japanese internment camp. Next up: key roles in the coming-of-age comedy “Rocket Science” (releases Aug. 10) and “21” (out next year, starring Kevin Spacey and Kate Bosworth), which tells the story of the real MIT card-counting crew that hustled Las Vegas for millions.
And he’s not stopping yet.
Wearing a long-sleeve printed T, his hair swept and tousled in all directions, Yoo chatters away about his work, his beginnings and his life in tinsel town. He’s an elaborate storyteller, which makes his interviewer a bit antsy since the minutes before he must jet off to his next gig are quickly ticking away.
But the man’s got so much candor and spunk that, ultimately, you can’t help but turn your watch the other direction and just listen.
Rarely stopping to take a bite out of his sandwich, Yoo talks animatedly about growing up in East Brunswick, N.J. At a young age, his parents encouraged him to pursue a career in medicine or business, but even then, Yoo had a mind of his own.
“I wanted to be an archeologist, an astronaut, a f-cking cowboy,” Yoo says. “Everything I wanted to be was purely defined by the last movie I saw.”
In the fifth grade, Yoo was put in his school’s gifted program, TAG (“I don’t know what the hell that meant, but I got to get out of class and move shapes around.”) For one project, he and his friends created a movie — a “‘Star Wars’ epic disastrous mess,” he says.
“We turned my entire basement into a spaceship with markers and paint,” he recalls. “My parents flipped out.”
But the experience fueled his passion for film.
It wasn’t until college that Yoo really explored acting as a career. He majored in theater, English and history at the University of Pennsylvania.
After college, he moved to New York and performed in a number of off-Broadway plays. Reviewers often described the young actor as raw, but promising. For Yoo, that wasn’t good enough. He threw himself into his work, sharpening his voice and expressions. Improving his craft was a “driving addiction,” he says.
In the meantime, with a depleting bank account, Yoo says he was literally living the life of a starving actor. His mother was concerned. When she called one day to probe about his future in acting, he interrupted her and asked if she was telling him to quit.
In a defeated tone, his mother replied, “Have you ever listened to me before?”
Eventually, Yoo moved to Los Angeles, where luck has been on his side. One afternoon in 2005, while sitting on a bench in an L.A. production office, “American Pastime” producer Tom Gorai walked by, took a brief look at him and asked if he was Japanese. When Yoo told him no, Gorai asked another question: “Can you act?”
Cast as the film’s star, Yoo spent two months in the blazing Utah desert. Set designers recreated the Topaz internment camp, where the U.S. government placed more than 8,000 Japanese Americans after the attack on Pearl Harbor.
Playing Lyle, a young pitcher who was forced to throw away his college baseball scholarship when his family was dumped in Topaz, Yoo says the harsh filming conditions made his performance all the more genuine.
“You can read books and watch interviews with the internees to see what it was like,” Yoo says. “But when you go out into the desert and it’s 110 degrees, you’re just in it. You don’t have to fake it. Sometimes, I would just think, ‘I’m miserable. I’m hot and hungry and tired.’ But at the end of the day, I got to go to the Hilton. The [internees] had to stay there endlessly. That just gives you a different perspective. You can’t even fathom how they lived such a noble existence.
“People have this idea that the big thing is getting the job. That never compares to actually doing it. You throw yourself, your life, your sleep out the window.”
“American Pastime” director Desmond Nakano admired Yoo’s dedication to the project.
“Whenever I saw him, he was working on his fingering on the saxophone,” Nakano says. “He had so much energy and so many ideas. He was constantly trying new stuff.”
Yoo says he has entered the film industry at a good time. He credits Korean American actors such as John Cho and Leonardo Nam (who plays Yoo’s brother in “American Pastime”) for breaking down barriers. All of Yoo’s roles, thus far, have been far from stereotypical.
His parents have learned to accept his career choice. His father, a minister, now sends out mass e-mails to all the other Korean church leaders he knows, urging them to ask their congregations to support his son’s movies.
Today, Yoo refuses to take his fortune for granted, saying that in Hollywood, anything can happen.
Still, before our time is up and he must zip off to another event, he takes a moment to bask in the sun.
“I don’t know what the next six months or the next two weeks are going to be like, so with everything I do, I ask myself, ‘If this were to be the end, would you be proud?’” Yoo says. “But for now, this is unbelievable. I’m so blessed. I’m also terribly exhausted. But, hey, you know, no complaints.”
By Corina Knoll
Photographs by Eric Sueyoshi
Funny how things change. Like how you can move from the ski resort town you’ve known all your life to a desert county pocked with country clubs, and immediately enjoy the exchange of windburn for sunburn. How gripping a golf club can suddenly feel as natural as clicking a ski boot into its binding and how the crack of a fairway wood meeting a ball can be just as satisfying — often more satisfying — than landing a 360-degree aerial after a jaunt through the moguls.
Funny how Toby Dawson’s life has taken on a completely new form in less than a pocketful of years.
Of course, he’s had a great amount of control over the vast changes. It was he who decided after winning that bronze medal at Torino last year to retire from freestyle skiing. Having finally achieved at the most elite level after more than a decade in the sport, he turned in his chips without the slightest sense of regret. “I can’t say that freestyle has been bad to me — I mean I’ve gotten the world from it — but at the same time … it’s so political,” he says about the scoring system that relies heavily on a panel of judges. “It’s nice to step away and not have to deal with that stuff anymore.”
Stepping away meant heading west to pursue a sport with more longevity. Which is why last October he left his role as a celebrated local athlete in his hometown of Vail, Colo., and entered the senior citizen haven of Rancho Mirage, Calif., settling in a gated community down the block from the reputed Mission Hills Country Club. Golf, he had resolved, would be his new vocation.
Trading in leaps off powder-packed cliffs for putts on a green may have been the transition of Toby’s life. Except that a development even more substantial — at times, downright unbelievable — occurred not too long ago — this one orchestrated entirely out of his hands and with a number of confusing particulars.
After all, how do you comprehend the sudden entrance of a man in your life you barely know, whose language you do not understand, but who you refer to as Appa — “father” in Korean? What does it mean to have rock star status overseas, partly due to your Olympic exploits, but mostly because of a story that began when you got lost in a market at 3 years old? And what do you owe a family and country that suddenly want to claim you after 25 years?
Says Toby, “I’m still kind of thinking, is this real?”
***
The story of Toby’s 28 years of life is the stuff of made-for-TV movies. It’s not hard to imagine maudlin instrumentals scoring the tale of a shy boy found wandering the streets of Pusan, South Korea, who is adopted by two ski instructors from Vail and becomes an Olympic medalist.
But an even better story would be if that boy could be reunited with his long-lost birth family.
At least, that’s what many felt last year when Toby had qualified for the Winter Games and newspapers were doing write-ups on Olympic hopefuls. When members of the media caught wind of Toby’s back story, they ran with it, hypothesizing how Toby’s high profile could aid in his search for biological family members — a correlation the skier had never actually made.
The Korean media was especially callous, telling Toby to wave to the camera and say things like, “I miss you, Mommy,” or asking manipulative questions about his thoughts on his “real” parents. And then there was the time a reporter just plain blurted out, “We found your father.”
He was speaking about Kim Jae-su, a 53-year-old bus driver from Busan, who had come forth claiming Toby as his son. Newspapers ran headshots of Kim and Toby side by side and it was hard to dismiss the physical similarities: the ruddy complexion, the coarse sideburns and hair, the shy eyes. Kim’s other son who he claimed was Toby’s younger brother also looked eerily like the athlete.
But Kim was one of dozens of others who asserted themselves as a blood relation, sending phone calls and e-mails that made Toby ill at ease.
When he won the bronze — the only American freestyle skier to medal — it was almost a footnote to a sexier story that begged to be written about the search for his past. But Toby hadn’t even entertained the notion.
“I never thought about it growing up. It was never in the forefront of my thoughts,” he said. “It was always, you know, I have these two great parents, and there is absolutely no reason to be finding anybody else.”
While Mike and Deborah Dawson had always been supportive of their children finding their birth parents (“It was something I had hoped for,” insisted Mike), it didn’t help that younger brother K.C. had met his biological father who proved to have uncomfortable expectations. Fellow adoptees at the Korean Heritage Camp in Colorado where Toby volunteers as a counselor every year shared similar experiences.
“Everyone seems to be disappointed,” observed Toby. “They’re not the people they wanted them to be, they’re not the people they expected them to be; and there’s a story behind why they were put up for adoption, why they were put into an orphanage and it’s not going to be a pretty story — the situation doesn’t allow that. These kids kind of set themselves up for a lot of disappointment so I don’t think I wanted to put myself down that same road mentally.”
In the year following Torino, Toby avoided requests to return to Korea and instead hung out in Vail, traveled a bit, proposed to his girlfriend and played a lot of golf.
“He wanted it to be more of a personal quest, rather than running to Korea anytime someone claimed to be his father,” recalled Deborah. “He wanted to make contact on his own terms.”
In February, when he joined up with the Korea Tourism Organization (KTO) as the ambassador for Korea’s bid for the 2014 Winter Olympics, he knew he’d have to settle the issue he had managed to circumvent for more than a year. A trip was arranged for Toby and his then-fiancée, Leah, to travel to Seoul for a media blitz about the candidate city, Pyeongchang. But that wasn’t the angle newspapers were salivating over.
Toby had finally taken a DNA test, and word was he was a positive match to Kim Jae-su. In addition to his duties as ambassador, a press conference had been arranged where the two would reunite.
On the last Saturday of February, a few strokes before midnight, Toby found himself at the Los Angeles International Airport waiting to board a Korean Air flight.
In a black wool coat and with a baseball cap lowered over his eyes, he sat slumped in a chair with Leah by his side.
“Deep down I never thought this would come,” he said, shaking his head. “I’m a little uncertain about the whole DNA test and not having any control over it makes me nervous.”
He had received news about the results while playing golf a week earlier.
“I was going through some emotions,” he said about the phone call. “I think I even got a little pissed.”
“It wasn’t his choice,” added Leah. “It was put on him by the media.”
“I never expected to meet this man.”
“Mr. Kim,” corrected Leah.
Both avoided using the word “father.”
***
The media was waiting for their arrival. There was the aggressive reporter who managed to get through security, smiling sweetly at Toby as he walked out of the gate while tossing pointed questions: “Why are you here? How do you feel?”
And there was the gallery of photographers who began scampering the minute they caught sight of Toby and Leah emerging the terminal. The couple, startled by the immediate scuttling around them and onslaught of flashbulbs, was nearly trampled after pausing to give the cameras a royal wave. Six hours later, their jetlagged smiles were splashed on the front page of a major daily.
The day would continue with camera crews tailing them from an introductory press conference to a meet-and-greet at the Olympic bid office, a stroll through the neighborhood of Insadong and dinner at the traditional Korea House. In less than a day, Toby and Leah had been thrust into a world where passersby rubbernecked to observe even their most mundane activities, often snapping quick photos with camera phones.
In a way, the attention was nice, just the thing that should have showered upon Toby when he made the podium in Torino. His win, however, had been eclipsed by the buzz around the sub-par performance from his much-hyped-up teammate Jeremy Bloom.
“He really did get looked over so much through the Olympic experience,” said Leah. “The ski team, they had their favorites and their pretty boy, but Toby’s the one that always skied better, especially under pressure.”
That night, Toby sat in his suite in the Lotte Hotel digesting how he had suddenly become a cultural phenomenon simply by crossing shores. Being an Olympian was one thing. The adoption/reunion story had amped it to a whole new level.
“I never expected that much excitement and enthusiasm,” he said, kicking off his shoes and flopping into a chair. “I knew Koreans are fanatical, but they took it to the next level for me. No one was really interested in what I was here to represent and about me being the honorary ambassador for Pyeongchang.
“They only wanted to figure out what was going on with my biological father.”
To all the needling questions about the impending reunion, Toby handed out canned answers: he was excited, nervous, had mixed emotions. Truth was, he was guarding himself from any emotion at all.
“I’m taking myself completely away from it,” he said. “I’m not trying to think about it at all just so there’s no setup and I can just roll through it. It will be a lot easier for me, and I’ll be able to fall asleep at night.”
Clearly, he’d already allowed ugly questions to dance inside his head. The ones that wanted to know how a father could “lose” a son, then suddenly find him at a successful time in his career. The kind of heavy questions you keep locked in your heart, knowing that if you delve too deeply into them, they’ll make you crazy.
Which is why Toby asked to meet his biological father for the first time in front of a roomful of invited reporters. It would be a cold environment, almost like a business meeting, and he’d be able to rein in those nonexistent emotions.
***
In a Lotte Hotel conference room erupting with greedy photographers and tactless reporters, Toby at last met Kim Jae-su. Walking in under a maelstrom of flashbulbs, Kim broke down the minute he saw his son. As the clicking of rapid shutters attacked the air around them, the two hugged, and Toby consoled him with the words, “Be strong.”
Sitting down at a table with a translator, Kim grabbed Toby’s hand, and the gallery took it from there.
Q: “Toby, how do you feel? Is he how you imagined him to be?”
A: “I never really had a picture in my mind of what he would look like or anything like that. But I’ve always grown up with pretty long sideburns. Looking at him now, I can see where these sideburns have come from.”
Q: “What did you mean when you told your father to be strong?”
A: “He was saying ‘I’m sorry,’ and I told him there’s nothing to be sorry for. Everything is good, we’re meeting each other, this is a great moment. Be strong.”
Q: “Mr. Kim, is there anything you want to say to Toby?”
A: “I am so proud to see you grow up, and I am thankful that you came all the way here to meet me.”
Q: “Do you have any childhood memories of Toby?”
A: “When Toby was 3 years old, he was trying to jump from a table, and he got hurt by hitting a corner of the closet, so he got a little scar.”
There were more questions, but they all seemed to melt together in the surreal circumstances that ended with Toby and his father being ushered out the hallway and into the elevator, suffocated by a river of unrelenting media. It wasn’t until the elevator doors closed that Toby was able to meet his 24-year-old brother Hyun Cheol, who had quietly sat in a corner of the room with his stepmother. Leah, who had watched the reunion with weepy eyes and a hand held over her mouth, finally got to shake hands with her future husband’s father.
“He’s the best,” she said to Kim while touching Toby’s arm, “so it must come from you.”
It was suddenly easy to be complimentary. Things were different in person. The distrust and skepticism about Kim that Toby and Leah had expressed earlier was hard to pin on the quiet man who meekly stole glances at his son.
It didn’t, however, make the details of Toby’s separation from his biological parents any less unsettling. The story Kim Jae-su tells begins with Toby’s mother taking him to the market in Busan. The 3-year-old wandered off, and there was no news at the local police station. Meanwhile, Toby wandered to a police station at the other end of town, was taken into custody and handed over to an adoption agency. From there, it gets a little sketchy. Kim has said he searched for Toby each night, that back then, people didn’t always go to the police who often weren’t helpful.
According to Kim, Toby’s mother is now married to someone else and wants to keep her identity private. Which means there is no one to corroborate what he has said or to fill in the blanks of a fragmented past.
But for all the holes in the story, Toby found himself accepting it. It was one thing to think the worst a million miles away, but meeting face to face humanized the situation and put his suspicions about the validity of that DNA test to rest.
“Just to see him, I knew he was my dad, and that was probably the weirdest, most freaky thing I’ve ever been through in my life,” said Toby. “I’d seen pictures of him, but it never hit home with me until then.”
The next couple days were a whirlwind packed with private family time and father and son communicating as best they could through interpreters. They stuck to the easy conversations that focused on interests, likes and dislikes, and similarities (both love spicy food). They toasted each other over kalbi, tipped back shots of soju, took a tour of Changdeok Palace, shopped at the famous Tongdaemun mall — all while enduring the never-ending media spotlight. The reunion had somehow transformed from a trepidatious event to a breezy getting-to-know-you session where Toby smiled often and patted his brother on the back.
On the cusp of his departure from Seoul, Toby’s new family met him at the airport with gifts of ginseng. Moving in a huddle, the group walked slowly from the check-in counter to the gate, unwilling to break apart until the very last minute. Toby was stoic as he offered hugs all around. At the last second, his father grabbed his arm, took off his gold bracelet and pushed it into the palm of Toby’s hand. For the first time since he had arrived, Toby’s lip quivered and tears formed in his eyes. He quickly brushed them away, waved goodbye and walked through the gate.
***
“The situation was a lot better than I could have expected, you know? They weren’t out for anything. They just were showing their appreciation for finding me. They’re just willing to kind of take it slowly and step by step. Not really trying to force the issue or do anything weird. They’re trying to keep everything as natural as possible.”
Toby is sitting in his home office amidst a clutter of golf clubs, pro-am plaques and random photos while reflecting on the trip. It’s been a little more than three months since he returned and since then he’s gotten married, honeymooned in Jamaica, appeared on “Oprah,” and traveled to Pusan to take part in a traditional Korean ceremony with his father’s family and friends.
“It was tough because he’s very quiet, he’s very reserved, and he doesn’t talk a lot,” says Toby about his father. “But this second trip, I actually got to see a little bit more of his personality. I think he was standoffish in the beginning because he didn’t want to be overbearing. I went fishing with him, and he got to show off because that’s his passion. He was catching fish left and right. He filleted it all up and we had sashimi right there on the ocean. To see him in his own element was really nice.”
His final thought on the subject predicts a relationship that goes well into the future. “I want to keep going back and visiting, keep learning more,” he says. “It’s just nice to be able to spend time with them.”
It’s just after 2 p.m., and there’s still plenty of daylight remaining, so Toby excuses himself to change into a striped polo and throw on some shades. Climbing into his personal blue golf cart, he heads for the back nine at Mission Hills.
As the sun sears his already deep-brown skin, he stands on a tee, lines his club up with the ball in front of him and bends his knees. Twisting his face into a grimace, he swings back, then unleashes. Thwack! He watches the ball soar until it gets lost in the folds of the sky. Nodding his head to the hip-hop coming from the iPod on his golf cart, he settles back into his stance and prepares to hit another.
He’s got a handicap that hovers around a seven and a goal to earn his PGA Tour card by 2010. But right now, he likes playing laid-back rounds for hours at a time during which there are no snow flurries whipping at his face (he always did hate the cold), no looming pressure to protect his world ranking (it was No. 1 when he left the sport), and no judges robbing him of points.
Most of all, he likes that the one thing he feared would turn this new life upside down has turned out, so far, OK.
Life, and all of its modifications, is looking undeniably good.
“Content,” is what Leah calls it. Toby finally seems content.
Funny how things change.
By Michelle Woo > Photographs by Eric Sueyoshi
Tim Yu stands over his daughter’s cage-like hospital bed, shielding her closed eyes from the artificial lights. Her cheeks are puffy from the medication. She squirms as if she’s having a bad dream. A plastic tube is connected from the chemotherapy drip all the way to a vein in her tiny leg. Numbers move up and down on the blood pressure monitor. Time passes slowly.
Behind the thin curtains are the sounds of children crying and multiple televisions buzzing at once. Tim sits down next to his wife, Susan. Wearing bright orange visitor’s stickers, they stare at the digital machines.
“There’s a lot of waiting. There’s a lot of silence. We try to be as normal as possible, but we’ve had to redefine ‘normal,’” Tim says.
Just five months ago, the Yus experienced the biggest miracle of their lives: Susan gave birth to triplet girls. But their excitement soon turned to panic when Elyse, the eldest of the three, was diagnosed with hemophagocytic lymphohistiocytosis (HLH), a deadly blood disease that strikes approximately one in a million.
Without treatment, the disease is fatal. The median survival time reported in various studies is two to six months after diagnosis. While chemotherapy and other medications can buy Elyse more time, a bone marrow transplant is the only hope for a cure.
But the odds of finding a bone marrow donor match aren’t on her side. A sibling would be the first option, but her fraternal sisters are too young to donate and could also carry the disease. Because tissue type is inherited, there is an 80 percent chance that Elyse’s match will be Korean. Yet ethnic minorities are largely underrepresented in the bone marrow donor registry. Of the 6.5 million donors registered, 400,000 are Asian and only 50,000 are Korean.
Gazing at their fragile newborn girl, Tim and Susan say these numbers need to change.
***
The couple met at a church in Los Angeles 18 years ago. Tim was a college freshman. Susan was a high school senior. They married in 2001 and recently moved to Canyon Country, Calif.
For four years, they struggled with infertility. Susan tried hormone shots, artificial insemination — the works. As a final effort before turning to adoption, she underwent in vitro fertilization.
Finally, the Yus got their wish — and more.
“The doctor started mumbling something,” says Tim, 36, recalling the moment he saw three little heartbeats on the ultrasound monitor. “They looked like grains of rice beeping. It was shocking. The doctor said the chance that three eggs would take was one in a million. We thought, ‘This must be divine intervention.’”
On Feb. 1, 2007, three babies entered the world: Elyse, Faith and Erin. They were perfect, doctors said.
As they had anticipated, life became crazy. Susan, 35, would clear out the shelves of diapers at Target. Grandparents were on hand around the clock, working in shifts. The Yu house was filled with chaos, laughter and joy.
Everything changed on May 1. Elyse came down with a fever that wouldn’t budge with Tylenol. Over the next few days, it spiked to 104 degrees. Tim and Susan rushed her to the hospital, where her body was pricked and punctured with needles. Through a number of blood tests, they found that her platelet count was dropping rapidly.
Elyse was moved to the Childrens Hospital Los Angeles. At night, her parents slept on a cot near her bedside.
Doctors found that Elyse’s spleen and liver were enlarged — five times the normal size — which quickly led them to a diagnosis. On May 6, Tim and Susan were taken into one of the hospital’s conference rooms, where they learned all about HLH.
As the doctor left the room, Susan broke down and cried.
“I was barely even adjusted to being a mom and to being a mom of triplets,” Susan says. “Now I had to deal with my child possibly being terminally ill. My life just turned upside down.”
***
With HLH, Elyse’s body has too many histiocytes and lymphocytes, both of which are white blood cells that fight infection. These cells go haywire and attack healthy cells, causing damage to a variety of organs.
“Her body is basically killing itself,” Tim says bluntly.
HLH is usually inherited, but it can also be caused by certain diseases or infections. The disorder primarily affects babies, but it can be found in patients of all ages. The most common early symptoms are a fever, an enlarged liver and an enlarged spleen. HLH is often referred to as an “orphan disease,” meaning that it strikes too rarely to generate government-supported research.
Chemotherapy can control the disease, but it is not a cure. Elyse’s only shot at remission is a bone marrow transplant from a volunteer donor. Bone marrow is the soft tissue found in the hollow interior of bones, which produces new blood cells.
“[With a bone marrow transplant,] you’re removing the bone marrow that has the defect in it and replacing it with bone marrow that produces healthy cells,” says Jeffrey Toughill, president of the Histiocytosis Association of America, a New Jersey-based organization that supports those dealing with rare histiocytic disorders such as HLH.
Thirty percent of patients needing a transplant find a matching donor within their families. Tim and Susan both joined the bone marrow registry 15 years ago when a friend was diagnosed with leukemia. Neither, however, was found to be a match for baby Elyse.
Frightened and overwhelmed, Tim and Susan decided to hold a meeting with family and friends. Soon, their living room was swarming with people anxiously waiting to hear how they might be of service. Standing with markers and presentation easels, they brainstormed outreach projects and assigned various tasks. Some would help set up bone marrow drives at local Korean churches. Others offered to help babysit Faith and Erin. Many went home and sent e-mail messages to everyone in their address books, urging them to register as donors.
Tim also asked his cousin, a documentary filmmaker, to make a video of Elyse’s story. It’s now posted on YouTube and on Elyse’s Web site, www.elyseyu.com, which includes details on bone marrow drives throughout the nation, information on the medical condition and frequent updates from Tim and Susan.
Tim says he didn’t think twice about going public with Elyse’s story, despite some early anxiety expressed by his parents. Sometimes, when genetic illnesses strike, first-generation Korean Americans opt to keep quiet. They don’t want to be stigmatized as having a disease.
“But if you don’t tell people that you need help, you won’t receive it,” Tim says.
So far, more than 9,000 people have visited Elyse’s Web site. More than 700 have registered as bone marrow donors at drives held across the nation. Each night, Tim clicks through a roundup of e-mails, reading messages of encouragement and updates on how people are trying to help.
One woman wrote that she wanted to set up a donor drive at a church in Korea. Another wanted to know whether, at the age of 73, she is too old to donate her marrow. (To qualify as a donor, you must be between the ages of 18 and 60 and meet certain health guidelines.) Many simply tell Tim and Susan that they are being prayed for.
“It’s amazing,” Tim says. “We’re getting support from complete strangers. The word is spreading like wildfire.”
Sharon Sugiyama, director of Asians for Miracle Marrow Matches, a Los Angeles-based organization that has coordinated many of the drives, says that while Elyse’s story has captured the hearts of many, with impressive donor turnouts, what’s most important is that those who have registered will follow through with the transplant if called upon. Sugiyama says that in the Asian American community, an alarming number of donors back out once they’re matched. The statistics: 75 percent of Caucasians in the registry consent to the procedure when matched, while only 40 percent of Koreans follow through.
“If the donor isn’t willing,” says Sugiyama, “it’s like false hope.”
***
For Tim and Susan, each day begins the same way. Susan wakes up at 8 a.m., lifts Elyse onto a table in their bedroom, and flushes her PICC line (the IV connected to her leg) with Heparin to prevent her blood from clotting. She then loads up several syringes with various medications, including Decadron, a chemotherapy drug that makes her hungry all the time; Enalapril, which controls her blood pressure; Nystatin, an anti-fungal agent; and, on Saturdays and Sundays, Bactrim, an antibiotic that gives her horrible diarrhea. Susan checks off each dose on a homemade chart that is taped to the wall. So far, insurance has covered all the medical expenses.
Elyse is responding well to chemotherapy, but the side effects can be as harsh as the disease itself. Her face is so bloated that she can’t hold her head up without assistance like her sisters can. She has deep sores from the diarrhea. She is often nauseous.
Susan says they must call the doctor every time something seems abnormal — if her breathing seems off, if she’s breaking out in a cold sweat or if she looks a little pale. But most of the time, Elyse just cries.
“It’s frustrating,” Susan says. “I can’t tell what’s bothering her. I don’t know if it’s a dirty diaper or if it’s something more. I can’t ask her. She can’t tell me.”
Tim and Susan have built their routine around Elyse’s weekly hospital visits and daily treatment, but sometimes, they feel that their strength is wearing thin. In mid-June, they took Faith and Erin to the hospital for a blood test to see if they also carry the gene for HLH. As of press time, they have not yet received the results.
“There’s that fear — what if they have it, too?” Susan says. “It was so difficult watching the two of them lying on the doctor’s tables, screaming and crying as doctors drew four vials of blood. I don’t know how I’m doing this.”
***
With a bone marrow transplant, HLH patients have a 50 to 60 percent chance of survival, Toughill says.
“We still have a long way to go,” he adds. “I’ve talked to families whose children are doing well. But you always hold your breath. Sometimes, [HLH] can return.”
A quick Internet search brings up a number of family-built Web sites dedicated to infants with HLH. Through the months, some sites have turned into memorials. All begin with the same story: the high fever, the string of medical tests, a frantic search for a match.
“Oh, it was a nightmare,” says Cecilia Olsson, grandmother of a baby girl named Anna in St. Louis.
Anna was fortunate enough to undergo a bone marrow transplant, but about three weeks later, she died unexpectedly at 6 months and 19 days. “We don’t know what happened,” Olsson says.
A number of complications can occur during a transplant, including severe inflammatory reactions, hemolytic anemia and graft-versus-host disease. Some children who are diagnosed late may have severe and irreversible brain damage even if a transplant is successful. After a bone marrow transplant, patients are more susceptible to infection and bleeding.
In the midst of their questions and fears, Tim and Susan are still able to find little moments to embrace their lives as new parents. One Sunday afternoon, Susan dressed the three girls in pink, laid them on the bed and giggled as she took pictures.
“The joy outweighs everything,” Susan says.
They say that Faith is the expressive one, Erin smiles all the time and Elyse is very strong. They say their family, their friends and their faith in God are what keeps them going.
“We believe that there is a purpose for everything,” Tim says.
At night, Susan puts Elyse to bed and lingers for a moment. She says that all those dreams she had while she was pregnant — taking her daughters to the park, giving them ballet lessons, encouraging them to play an instrument — all faded away.
“I stand next to her crib at night while she’s sleeping, wondering if she’s going to make it through the night,” she says. “I wonder whether the transplant is going to take place. I wonder whether there’ll be complications with the treatment. I wonder what the recovery process will be like, how long it will be until she feels normal.”
When morning comes, the fight continues.
Becoming A Bone Marrow Donor
1) Join the National Registry
Complete a consent form and provide a swab of cheek cells. The registry is searchable by patients worldwide.
2) Find out if you are a match
Further testing determines whether you are a patient’s perfect match. The donor decides whether or not to continue.
3) Donate
During the procedure, a small amount of marrow is collected from your hip bone using a needle and syringe. Anesthesia is used.
Afterward, you may be sore for a few days to a few weeks, but normal activity may be resumed. Your marrow replenishes itself within a few weeks.
Source: Asians for Miracle Marrow Matches, www.asianmarrow.org
More Ways To Help
Aside from registering as a bone marrow donor, here are some other ways to support Elyse and the fight against rare histiocytic disorders such as HLH.
• Host a bone marrow drive
E-mail drive@elyseyu.com with a date, time, location and a number of potential donors. A representative from Asians for Miracle Marrow Matches will contact you.
• Donate your frequent flyer miles
Through the Northwest Airlines AirCares program, you can donate airline miles to the National Marrow Donor Program. The NMDP uses these frequent flyer miles to fly unrelated marrow and cord blood transplant (also called BMT) recipients and their caregivers to their transplant centers free of charge. For details, call (800) 327-2881 or visit www.nwa.com/cgi-bin/wp_donate_aircares.pro.
• Make a contribution
Support the Yu family by sending your donations to: New Life Community, c/o Elyse Fund, 846 S. Union Ave., Los Angeles, CA 90017.
All proceeds will be used toward promoting bone marrow drives and medical expenses
• Golf, walk or hike for a cure
Visit www.histio.org for upcoming events that support awareness and the search for a cure to rare histiocytic disorders.
By Louis Wittig
Illustration by Ian Kim
A detective is sent to investigate a body found in the city’s most lavish hotel. It could be the premise of any one of a million murder-mystery novels. Except that this detective is Inspector O, a sardonic investigator for North Korea’s secret security services, and this hotel is the Koryo, the finest establishment in Pyongyang.
O is the sleuthing protagonist of A Corpse in the Koryo, the first American murder-mystery novel set north of the 38th parallel. The double-crosses and gunfights are all there. But the real mystery that Corpse solves isn’t who the killer is, but what daily life is like in one of the world’s most closed societies.
The author, a veteran Western intelligence officer with decades of experience working in North Korea, writes under the pseudonym James Church. Church is one of a small circle of Westerners who have known North Korean officials well enough to fictionalize them. The inspiration for Corpse came to him years ago, as he sat in a North Korean consulate waiting for a travel visa.
“Inspector O emerged as a surprise to me, and yet he was very familiar,” says Church, reached by e-mail. “He created himself without much fuss early in the process, almost as if he and I had known each other for a long time.”
Narratives that bring North Korean society into sharp focus are hard to come by. Even at the height of the Cold War, mysteries and spy thrillers like Gorky Park and The Spy Who Came in from the Cold allowed readers to peer behind the Iron Curtain through the eyes of Russian and East German characters. North Korea, however, controls information much more strictly than the Soviet bloc, and has produced comparatively few émigrés or dissident writers to encourage and teach Western novelists.
While there’s no shortage of breathless news reports on North Korea’s nuclear weapons program, Church wanted his book to add depth to what he feels is frequently superficial coverage. He began writing after 2001, when the media and official hysteria over North Korea were rising in tempo with the nuclear crisis.
Corpse’s North Korea is a static and complicated place. In Pyongyang, offices are repainted rather than repaired. The agents who secretly search apartments studiously rearrange the furniture before they leave and the currency that everyone carries around is nearly worthless.
Readers have praised the novel’s wealth of detail, which simultaneously immerses readers in North Korea’s daily life and undermines their preconceptions about it. “I was a bit surprised at all the smuggling going on,” says Tony Ross, who picked the book up after hearing about it on National Public Radio. “I thought [North Korea’s] borders were a bit more closed.”
For as much as it reveals, mystery is A Corpse in the Koryo’s leitmotif as well as its plot. The escalating series of whispered warnings and shootouts that draws Inspector O deeper and deeper into a feud between rival car-smuggling gangs blends with the equally mysterious banalities of North Korean society (no one in the Manpo train station knows quite when the next train will arrive and traffic police can’t explain the rules they enforce). A surreal picture emerges of a place where answers are so rare, asking questions isn’t worth the trouble. Indeed, daily life in North Korea seems as much a mystery to insiders as to outsiders.
“This question of uncertainty helps define the existence of life in North Korea,” says Church. “For many questions, people don’t know the answer and are never liable to find out. So what do they do?”
Unexpected characters rise from this milieu. Far from a goose-stepping authoritarian, Inspector O cares more about getting a cup of hot tea than getting to the bottom of his case. He avoids wearing the obligatory portrait-pin of the Dear Leader just to tweak his superiors, but he snaps at foreigners who criticize his country.
Some experts suggest that administration officials who have taken a black-and-white view of North Korea in recent years could benefit from Corpse’s picture of a highly nuanced country. Church denies his work has any overtly political purpose.
“[I wanted to write a story] where two cultures and political systems are reduced to the level of individuals,” he says.
The approach has earned praise from critics. Corpse was nominated for a 2006 Gumshoe Award for best first mystery novel, and a Korean translation is slated for next summer.
A sequel, Blood Moon, dramatizing the first recorded bank robbery in Pyongyang, is slated for release this fall. As long as North Korea remains a resolutely closed society, fiction may be the only way for readers to get inside, and Inspector O will have plenty to investigate.
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