Trebing family provides inspiration

Standing in a Wantagh High School classroom, Jennifer Kolar had been holding back tears for an hour. But then she approached Stacy Trebing and, as she began to talk, they rolled down her face.

Several years ago, she explained, Kolar and her husband had tried to get pregnant with a baby who could provide a bone marrow transplant for their now 7-year-old son, Dylan, who has a disease called Shwachman Diamond Syndrome. They tried twice, and gave up.

Then Kolar, who lives in Sayville, read the Newsday series in October about how Steve and Stacy Trebing had a third child whose bone marrow could be used to cure their daughter Katie's Diamond Blackfan anemia disease.

"This just inspired us to try again," she told Trebing.

Stacy Trebing spoke Thursday to a bioethics class about the decisions she and her husband made in their quest to cure their daughter of her deadly disease. The couple's 2-year-old son Christopher, whose bone marrow was used to cure Katie, slept next to her in his stroller. Kolar attended at the invitation of one of the teachers who knew about Kolar's struggle and thought she would want to hear Trebing in person.

Katie Trebing, now 5, was declared cured of Diamond Blackfan anemia this year after receiving the transplant. The family's story was first told in the five-part Newsday series.

"That's the whole purpose of why we went public with it," Trebing said. She said she was thrilled to meet Kolar. "What an amazing opportunity for us to actually meet someone who it may make a difference in their decisions, their lives and their children's lives."

Since the Newsday series ran, Stacy Trebing has become an ambassador for educating about so-called donor siblings -- children conceived to help cure a sibling. She has spoken to an ethics class at Stony Brook University, and the family has been contacted by media worldwide.

And tonight at 10, the Trebings' story will be broadcast on ABC News' "20/20" program. The Trebing segment is part of an hourlong special hosted by anchor Elizabeth Vargas.

"It's an incredibly dramatic story," Vargas said. "It's about parents' love and what they will do to save their child."

Katie Trebing was born in 2002 with the disease, which robbed her body of the ability to make red blood cells that circulate oxygen to the organs. To keep her healthy, she needed regular blood transfusions to give her someone else's red blood cells. The disease likely would have killed her by the time she reached her 40s. Steve and Stacy Trebing enlisted fertility experts and a geneticist to help them have another child who would share the same inherited section of DNA with Katie.

Katie turned 5 on Dec. 12; an ABC News "20/20" crew filmed the gaggle of little girls who helped her to celebrate and that birthday party will be part of tonight's broadcast.

Stacy Trebing recently learned of a 3-year-old girl with Diamond Blackfan who, like Katie, underwent a bone marrow transplant from an exact-match sibling. Stacy Trebing said the 3-year-old is now fighting for her life after contracting a potentially fatal complication called venal occlusive disease, complicated by a second condition called graft-versus-host disease.

"This could easily have been Katie," she said. "We really are very grateful for what we have."