By Irene Sege
One morning in 2006, Aidan Barry showed his wife, Midori Kobayashi, a newspaper story on the plight of the lost boys of Sudan and children affected by the diamond war in Sierra Leone. Little did the Stratham, N.H., couple know that this moment at their breakfast table would lead them to adopt a 6-year-old boy from Ethiopia whose desperately poor parents could not support all their children. Neither could they predict that, seven years later, their adopted son would develop a life-threatening blood disorder connecting his adopted family and birth family for a stem cell transplant to offer him the best chance of cure.
Behaylu Barry has severe aplastic anemia, a bone marrow failure syndrome that prevents his marrow from producing the red blood cells that carry oxygen, the white blood cells that fight infection and the platelets that promote clotting. He was diagnosed in February after suddenly suffering nosebleeds and extreme fatigue, never making it to the first practice of the competitive soccer team that had just selected him.
Had Behaylu developed the condition in his Ethiopian village, odds are he would not have survived— either because he would have succumbed to infection or bleeding before being diagnosed or because treatment was unavailable. Instead, in April, two of his five African siblings left their village for the first time, boarded their first airplane, and traveled to New England, where one would donate bone marrow and both would excitedly take their first hot showers.
Behaylu’s physicians at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center – Leslie Lehmann, MD, clinical director of the Stem Cell Transplant Center, and Colin Sieff, MB, BCh, director of the Bone Marrow Failure Program – initially assumed it would be impossible to connect with the family of a boy adopted from an African orphanage. However, Barry and Kobayashi, who also have three adult biological children, maintain a relationship with their adopted son’s biological family. They’ve been paying for the education and health care of Behaylu’s siblings in Ethiopia. Two years ago, they took Behaylu to visit his family there. So when doctors said a matched sibling donor would offer Behaylu the best treatment option, his parents sent DNA swabs to his family in Africa via a representative of an Ethiopian charity they support.
“We thought Behaylu’s family needed our support,” says Kobayashi. “Who knew we’d end up needing them? It’s a miracle.”
Healthy bone marrow (left) and bone marrow failure (right)
When a matched sibling donor is available, Lehmann says, transplant is the first line of treatment for severe aplastic anemia because the chances of success top 90 percent. “This family moved heaven and earth to get the siblings here quickly,” she says.
After determining that Behaylu’s 9-year-old sister, Eden, and 16-year-old brother, Rediat, were equally healthy, clinicians decided that Rediat, being the larger sibling, would make the best donor. On May 12, doctors took Rediat to the operating room where some of his bone marrow was aspirated from his hip bones. Later that day, Behaylu, who had undergone five days of chemotherapy to prepare his bone marrow to receive Rediat’s stem cells, had his brother’s cells transfused into his bloodstream via a bag hung on his IV pole.
If a matched sibling donor had not been available, doctors would have treated Behaylu with transfusions and a combination of medications, which, Sieff says, lead to a remission in 70 percent of cases but cannot cure the disease. If this treatment fails, the next step would have been to find an unrelated donor, which is less successful than a matched sibling donor transplant, although results continue to improve. For patients like Behaylu, finding an unrelated donor is daunting because the bone marrow registry overwhelmingly contains samples from people of European descent.
Meanwhile, Behaylu will remain hospitalized until mid-June, then return home for six months of relative isolation to allow his new cells to take hold. “We should be able to offer him a true cure,” Lehmann says.
“I’ll be able to do stuff again, like sports,” says Behaylu.
The soccer team is holding his place.