By Corinne Holroyd
March 07, 2014 – 2:00 AM
STRATHAM — Behaylu Barry is like any 12-year-old boy: He competes on soccer and basketball teams, plays with the family dog named Yoshi and is in the seventh-grade at the Cooperative Middle School.
What’s different about him, however, is that he has a condition called aplastic anemia, a version of bone marrow failure, in which the body stops making enough new blood cells.
Aplastic anemia is rare, with only 600 to 900 people diagnosed each year in the U.S. according to the Aplastic Anemia and MDS International Foundation. One of the best treatments is a sibling-provided bone marrow transplant. Behaylu’s father Aidan Barry, however, said that this case is “a semi-unique exception.”
“I don’t think they’ve ever done a transplant from a sibling in Africa,” he said.
Aidan and Behaylu’s mother, Midori Barry, adopted Behaylu from Ethiopia in 2007. He has five siblings who could be possible bone marrow matches, however, they are all still in Africa.
“We not only have to deal with the American government, but the Ethiopian government,” Midori said.
Aidan and Midori, who have lived in Stratham for 30 years, adopted Behaylu when their daughter moved out of the house. Aidan read a Boston Globe article about American families adopting African children orphaned by war.
He showed his wife the article and said she was all for adopting a child. They went through the group Wide Horizons for Children and adopted Behaylu from Ethiopia. When the Barrys went to see him, they made a network in Ethiopia with a charity and have helped his siblings afford private school and live a “middle-class life” according to Aidan.
Soon, however, his son began to miss his siblings, so the family visited in February 2012 and caught up with their network in the area.
“He was welcomed in his village like a home-coming hero,” he said.
Their friends in the network they built in Ethiopia are the ones who have completed cheek swabs on Behaylu’s siblings, which they finished Friday, to see if any are a match. The swabs then arrived in a lab in Massachusetts on Wednesday, March 5 for testing.
The family hopes to know by early next week if there is a match.
These contacts have also been speaking with the Ethiopian government, sending articles and finding out more information.
The family and contacts are working to find out how to get one of his siblings, if one is a match, to America. This means dealing with safety, laws and guardianship in order to make medical decisions during the month that sibling would have to be here.
“(Senators) Ayotte and Shaheen have been very supportive,” Aidan said. If the Barrys cannot get one of Behaylu’s siblings to America for the surgery, the next option would be an autoimmune suppressant medication treatment. According to Midori, it has a 70 percent success rate and requires a lot of follow up.
If the medication does not work, the family will have to look for a non-identical bone barrow transplant.
“Twenty years ago, the outcomes were not as good,” Aidan said.
Currently, his blood is at 20 percent capacity and requires blood transfusions for platelets once a week and transfusions for red blood cells once a month.
“Whenever they give me the platelets I have to sit in a chair with a thing in my arm,” Behaylu said, rubbing his arm where the needle would be.
Aplastic anemia makes it hard for Behaylu to run or do anything active. He also cannot take the bus to school, has to watch what he eats because of germs and has to use antibacterial hand sanitizer, as his immune system has a hard time fighting off infection.
“It’s a subtle change, but it’s a difficult change for a teenage boy,” Midori said.
She also said the symptoms came on quickly. He was in great condition playing soccer and basketball when he would suddenly get nosebleeds. They were difficult to stop due to his condition, but the family did not know it yet.
His condition quickly worsened as he was playing basketball and he had exhausted himself after two minutes. The family brought him to a doctor, where they found that his white and red blood cell and platelet counts were so low, he needed to be brought to Boston Children’s Hospital.
“He went from being a super athlete to not being able to jump for the ball,” Aidan said.
Luckily, his aplastic anemia is not inherited. Inherited conditions mean there are damaged chromosomes, which are difficult to treat.
Since his condition is acquired — although, like in many cases, it is not known what caused the reaction in his body — he will not have lingering chromosome damage after treatment.
“He has always been very healthy,” Aidan said. “He keeps the doctors laughing at the hospital.”
While the Barrys have been focusing on Behaylu’s health and the logistics of a transplant, their friends and neighbors have been helping the family with food and financial support.
“We feel very blessed by the community of Stratham,” Aidan said. “They’re doing functions he (Behaylu) doesn’t even know about.”
There is currently a fund set up with Annie’s Angels, a group which helps families fund-raise through financially difficult times due to life-threatening illnesses.
Those who wish to donate can go to http://anniesangels.net/product/fund-donation/ and select “Spirit of Behaylu.”
Behaylu is looking forward to feeling better, hopefully by this time next year, and getting back to his normal, busy schedule when he is in eighth-grade. While his actual date of birth is not known, the family will celebrate his 13th “birthday” on March 28.
“Hopefully I can play soccer,” he said. “I spend all my time in this house, too much (time).”