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Siblings from Ethiopia give sick N.H. teen a chance for a cure

STRATHAM, N.H. — Behaylu Barry is a seventh-grader who loves action movies, comedies, and sleepovers with friends, but nothing gets him going like soccer and bacon. After a semifinal victory for his team last spring, he scarfed down 36 strips of bacon at a team lunch — then scored two goals that afternoon in the state finals.

Once a scrawny boy in an Ethiopian orphanage, Behaylu has become an honor roll student with a high-wattage smile, a trove of friends, and what seemed, until February, like endless reserves of energy. But when he began getting regular bloody noses, then became too tired to get out of bed for basketball practice, his parents started to worry.

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A battery of medical tests revealed that Behaylu has severe aplastic anemia, a life-threatening disease that ravages stem cells in bone marrow that produce the key components of blood and is so rare it strikes only two or three people out of every 1 million in the United States each year.

The diagnosis set off a mission that reached across the globe, reunited Behaylu with a brother and sister, and linked his world in small town New Hampshire with the remote Ethopian village he left behind.

Behaylu’s plight was daunting.

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If a perfect-match donor could be found, a stem cell transplant would offer patients like Behaylu a “true cure” for severe aplastic anemia, said Dr. Leslie Lehmann, clinical director for stem cell transplants at the joint Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. But the 20 million potential donors in the registered database are largely of European ancestry, so it is rare for a person of color to find a perfect match from a stranger.

Siblings have a 1 in 4 chance of matching, but doctors assumed that would not be an option for a boy like Behaylu, who was adopted from uncertain circumstances half a world away.

Doctors explained to his parents that there were alternatives — a mix of powerful drugs and regular blood transfusions, or a transplant from an imperfect match — but those would be more grueling and less likely to succeed.

That was the moment Behaylu’s father, Aidan Barry, says he went into “battle mode.”

It is unusal for Ethiopian orphans and their adoptive parents to maintain contact with birth families for a host of logistical and emotional reasons. But there is nothing ordinary about Behaylu or the New Hampshire couple who adopted him, Barry and Midori Kobayashi.

Barry is an Irish engineer-turned-teacher-turned-entrepreneur who got his first taste of the United States in college and settled here soon after. His wife grew up in Japan. They met in 1978, when he was 30 and Kobayashi was an 18-year-old exchange student backpacking cross-country.

After they sent the last of their three biological children to college, they lived what Barry called “the life of Riley,” buying a hot tub and flying to London on a whim for a concert, while contemplating adoption of one more child.

“We always thought we’d do three for ourselves, one for the world,” Barry said.

They got serious in 2007.

Knowing newborns and little girls are most popular in adoptions, they wanted to provide what Kobayashi called a “forever home” for an older boy. They imagined a child orphaned by famine, HIV, or war, so when an adoption organization matched them with 6-year-old Behaylu — whose name means “by the power of God” in Amharic — they were surprised to discover his parents were still living, in an impoverished town four hours south of the Ethiopian capital.

Barry traveled with an interpreter to meet the parents. He believes they gave up their bright middle child because they could not afford to feed all five of their children and thought Behaylu’s intelligence gave him the best chance to succeed.

Arriving in New Hampshire in the summer of 2007, Behaylu had never seen a shower, flicked a light switch, or slept in his own bed. When he learned a few words of English, he sometimes asked after breakfast if they would eat again that day. But when it was time to start first grade, he insisted on wearing a tie, knowing at age 6 that school was special.

Clear-eyed from the start, Barry and Kobayashi had braced for emotional and academic challenges, but Behaylu flourished.

“So much had been given to us with this wonderful boy,” Barry said, “that we wanted to give back.”

They began supporting a Vermont-based charity for orphans and marginalized women in Addis Ababa known as the Selamta Family Project.

In the process, they befriended a Selamta worker, Abel Solomon, who agreed to track down Behaylu’s family as the growing boy began to ask questions about his background. After two years of legwork, they reconnected with the family and arranged a trip in 2012 to the birthplace of Behaylu, who had by now forgotten the languages of his parents, Hadiyya and Amharic. The boy was greeted with a feast — helping ease feelings of abandonment — and his adoptive parents arranged for schooling and healthcare for his birth siblings, thinking of them almost as nieces and nephews.

Barry and Kobayashi never imagined they would get back anything in return. But with Behaylu’s diagnosis two years after that trip, those connections now gave them hope they would find a match for their ill child.

Mindful that the most optimal stem-cell transplants occur within 80 days of a diagnosis, they shipped test kits to Addis Ababa. Solomon explained the situation to the birth parents, drove the kits to the village, and swabbed the siblings’ cheeks. A Red Cross lab in Dedham confirmed that Behaylu’s 16-year-old brother, Rediat, and 9-year-old sister, Eden, were perfect matches.

Behaylu’s parents worked with their US senators to expedite passports and visas for the two village children, who lacked birth certificates. New Hampshire neighbors and civic groups raised money for airfare and other expenses.

On April 22, Solomon escorted Rediat and Eden 7,000 miles to Boston.

And on Monday, Behaylu is scheduled to begin five days of chemotherapy and immunosuppressant drugs, to prepare him for a transplant.

In a week, Rediat — with his sister as backup — will undergo anesthesia so doctors can extract marrow from a hip bone using a long needle. The stem cells from that marrow will then be infused into Behaylu’s bloodstream, to find their way into his bones.

For the past two months, Behaylu has been in and out of school while receiving weekly blood transfusions to sustain him until the transplant, his energy spiking and waning. With limited platelets, he bruises easily; with few white blood cells, he sustained a dangerous infection a week ago just from a scratch while retrieving a ball in the backyard.

Thursday, he seemed like his old self, kicking a rubber ball with Rediat in the TV room and tickling Eden, communicating with laughter but few words. Making himself a waffle, he playfully covered his ears when his parents started describing how they first met.

In a quiet moment, Behaylu said he worried the chemo would cause vomiting and cost him his prized flattop, though he liked hearing that one of the drugs might trigger hair elsewhere, imagining himself wowing his friends with a mustache.

He was eager to take his brother and sister on a tour of his school, where the teachers and seventh-graders greeted Behaylu like a celebrity. In class after class, girls sighed at the sight of Behaylu’s gleaming smile, and boys rushed up to give him bear hugs.

“Fist bumps! No hugs!” Kobayashi called, waving them off each time, guarding her son’s immune system.

Rediat and Eden were fair game, though. Behaylu’s English teacher, Elena Poelaert, embraced them both. “Heroes,” she told the two, who plan to return to Ethopia after the procedure. “You’re going to save our boy.”

Back in the lobby of the six-town Cooperative Middle School, they paused at a trophy case, Barry pointing out the championship photo taken the day his son — their brother — ate all that bacon after the soccer victory.

“See, Behaylu,” he told the children, pointing to the boy with the game ball, then identifying himself in the back row as coach.

“It’s all because of the great coach,” he quipped.

In that moment, Behaylu was not thinking about the transplant or the long months until he will be allowed to play soccer again. He was just a 13-year-old, ribbing his dad.

“It wasn’t the coach,” he said gleefully, “who chipped the ball over the goalie’s head.”

Eric Moskowitz can be reached at emoskowitz@globe.com.
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