Some 100 days after receiving a stem cell transplant to cure his severe aplastic anemia, Behaylu Barry still couldn’t invite friends into his home. He wouldn’t be returning to school until January because his immune system needs the time to get strong enough to fight the pathogens present in indoor spaces. But 13-year-old Behaylu was doing so well that his doctor cleared him to play soccer – outdoors, of course — for the first time since February, when he was diagnosed with the life-threatening blood disorder shortly before he was to join the competitive soccer team that had just selected him.
So Behaylu recently walked on the field with his old traveling team, the Exeter (NH) Hawks, for a two-game pre-season tournament. The Hawks won, 4-1 and 6-1, with Behaylu, playing center midfield, scoring two assists in the first game, three in the second – and a goal in the second game with a head shot from the corner. His mother, Midori Kobayashi, cheered so much and so loudly that she lost her voice.
“Soccer is always pretty awesome,” Behaylu says. “This is the biggest step back to a normal life. One of them was swimming. One was hanging out with friends. Playing soccer is two steps. It’s one giant leap.”
“I know he pushed himself beyond his limits,” says his father, Aidan Barry. “But he’s 13. What do you do? Put him in a cage? It was a magical time for everyone.” …
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. …
Born in Baghdad in 2002 without access to advanced medical care, Maryam Idan stood little chance of receiving anything more than the most basic treatment for her sickle cell disease (SCD). By the time Maryam was a baby, her parents, Basim and Janin Al-Zoubaidi, had already lost three of their children to the blood disorder, so they knew the condition’s telltale signs. “When she started showing the same symptoms as her siblings, we immediately thought the worst,” says her father. “We knew there was treatment in America, but we had no idea if we would have the means to get there.”
An inherited disease, SCD causes a child’s red blood cells to malform and become stiff, taking on the shape of a sickle, like the letter C. These abnormally shaped blood cells can stick together and interrupt healthy blood flow throughout the body. This can cause a host of problems that can affect nearly every major organ, but it affects every patient differently. “Some kids don’t have pain or complications until they’re teens, while others suffer strokes and extreme pain and need blood transfusions when they are very young,” says Leslie Lehmann MD, director of the Stem Cell Transplant Program at Dana-Farber/Children’s Hospital Cancer Center (DFCHCC).
Like Maryam, most kids with SCD experience breathlessness, delayed growth, extreme fatigue and pain in their bones from the time they’re young. Kids with SCD also have weaker immune systems, making them susceptible to infections, and they’re at a greater risk for strokes, blindness and fatal iron-overload—another dangerous blood complication. In developed nations, where symptoms can be treated with medication, patients often still only survive until their late 40s. For patients like Maryam in developing countries, even the most basic treatment for these symptoms isn’t usually available, and death at a young age is very common.
The only cure for SCD is a stem cell transplant when the patient is young, similar to a treatment that someone with cancer would undergo. It involves the complete destruction of the immune system (as well as the sickle cells) through chemotherapy, then rebuilding the person’s immune system using healthy stem cells from a matched donor. …