In a pale yellow room in the Schlesinger home in Arnold, sunlight pours in through two long windows. Avery, 3, is running her neon-colored toy around the edge of the coffee table, making engine noises. Her pink-framed glasses are slipping down her nose, her short brown hair a mess of tangles.
She seems unaware that everyone in the room is talking about her. Her father is sitting in an armchair, her mother sinking into an overstuffed couch next to a 23-year-old woman from Germany she met two days ago. In another room, Avery's brother and sister are watching a cartoon, and its sounds flitter in and out of the conversation.
It's a normal setting, but the conversation isn't average coffee-table talk.
"We both turned to each other, and we said, 'At least it's not cancer,' " says Eric Schlesinger, 34, Avery's father, describing the moment nearly three years ago that he and his wife, Erin, learned their 10-week-old daughter has hemophagocytic lymphohistiocytosis, or HLH. "We had no idea what we were about to walk into."
HLH is a disease that causes infection-fighting cells to destroy the host's immune system. Untreated, it would obliterate Avery's immune system, cause irreversible brain damage, and eventually kill her.
Doctors at Sinai Hospital of Baltimore started Avery on chemotherapy and steroids, but they said that would stave off the disease for only a short time.
A bone marrow transplant was Avery's only option.
A search for a donor took the Schlesingers six time zones away to Germany.
Jana Walter, at the time a 21-year-old university student and aspiring teacher, received a letter from the International Bone Marrow Donor Registry, of which she was a member, asking her to undergo testing that would determine her marrow's compatibility with Avery's.
After a hospital visit, she was told her marrow could help save an American girl's life and was asked to donate it. The procedure required three days of hospitalization, two marrow extractions, and a week of rest. "I never thought about not doing it," Jana says.
'Do Something!'
July 21, 2006, six months after Avery's birth and the day of the bone-marrow transplant, started off simply. Doctors at Children's National Medical Center in Washington were confident things would go smoothly.
Eric brought Erin a cup of coffee, trying to soothe her nerves, and they sat in the room with Avery as she underwent the long process.
