Having a child diagnosed with a life-threatening illness is heart-wrenching for all parents, but when the diagnosis itself is uncertain, parents can face excruciatingly difficult decisions. This is what Katie and Josh Stevens of Idaho confronted after their son Riley was diagnosed in October 2012 with the blood disorder aplastic anemia, in which the body’s bone marrow produces too few oxygen-carrying red blood cells, too few infection-fighting white blood cells and too few clot-promoting platelets.
He was an 11-year-old skier and runner who was tired, bruised and unable to shake a cold. When his blood was drawn, he became pale, and his lips turned blue.
So Riley began a course of medications to suppress his immune system, but he had only a minimal response to the therapy. He needed a stem cell transplant.
Further testing at Seattle Children’s revealed Riley had shortened telomeres, or ends of chromosones, which stymied cells’ ability to regenerate. This is characteristic of another rare bone marrow failure syndrome called dyskeratosis congenita (DC), but Riley did not manifest other telltale signs of DC such as white spots in the mouth, lacy rash around the neck and brittle nails. Katie and Josh would need to decide between two very different stem cell transplant options. …
“It’s eye-opening to realize how fragile life really is when you’re young.”
Drew D’Auteuil certainly knows whereof he speaks. He is a 16-year-old animal-loving, skiing, rowing, volleyball-playing, honor roll student and licensed driver with braces and a shock of red hair. In April 2010, five months after receiving a stem cell transplant to treat the blood disorder severe aplastic anemia, Drew suffered rare, life-threatening complications.
One day Drew was biking with a friend near his New Hampshire home, suffering little more than a mild cough. The next day he was in the intensive care unit at Boston Children’s Hospital, intubated because of respiratory failure. Soon other organs were failing, too. Quick action by ICU and transplant clinicians saved the boy’s life. …
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. …