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. …
Here at Children’s Hospital Boston, our staff prides itself on providing world-class care for every patient that comes through our doors. But when they’re not busy performing surgeries, setting bones or caring for patients, many of our clinicians are doing research that will shape the future of pediatrics, or discussing how those changes will impact everyday care for thousands of people. Here’s a quick round up of what Children’s employees have been discussing with the media this past week.
A safer and earlier way to determine if a fetus has Down syndrome is being studied
An article in The Los Angeles Times discusses new technology soon to be available that will allow women to know early in their pregnancy whether they are carrying a fetus with Down syndrome. Children’s Brian Skotko, MD, MPP, speaks with the paper about the new tests – which are noninvasive and will pose fewer risks to the mother and fetus than current prenatal testing—and the questions they raise.
Dr. Skotko wrote a similar piece for Thrive last week and has opened a wide debate on the subject of prenatal testing.
Children’s Stem Cell Research Program, which developed 11 of the first 13 human embryonic stem cell lines approved by the NIH for federal funding, launched a new Web site today that aims to answer some of the basic stem cell research questions that people have and shows some of the ways that stem cell research has already impacted the lives of sick children.
The Stem Cell 101 videos page features Len Zon, MD, and George Daley, MD, PhD, the leaders of the Stem Cell Program, talking about what stem cells are, how they’re used in the lab and the work they’re doing to bring real cures to patients’ bedsides using stem cells. …