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The Trebing family continues to pay it forward and inspire

Newsday visited Katie Trebing, the young girl who made waves 11 years ago when she underwent a bone marrow transplant from her sibling, on Wednesday, Dec. 13, 2017. Since her surgery and recovery, the Trebing family has helped many others in a similar position regain hope by sharing their story. Credit: Newsday / Thomas A. Ferrara

For a family that has plenty of reasons to be thankful, the Trebings make sure to give back as well.

Fifteen years ago, Katie Trebing was diagnosed at 3 months old with Diamond Blackfan anemia, or DBA, a disease that keeps the bone marrow from producing enough of the red blood cells that carry oxygen throughout the body.

With few treatment options available, her parents Stacy and Steve Trebing used preimplantation genetic diagnosis (PGD), a rare pre-birth procedure used to ensure their third child, Christopher, would inherit a specific portion of DNA that exactly matched Katie’s, making Katie’s bone marrow transplant more likely to succeed. The PGD and later the transplant, which occurred a year after Christopher was born, were both successful.

Since then, Katie — now in her first year at Smithtown High School East — and her family have never lost sight of how lucky they are, and they’ve gone the extra mile to pay it forward.

Just last week, Katie and her family, of Nesconset, participated in the Nasdaq opening bell ceremony with The Bone Marrow Foundation, an organization the Trebings help to promote, said Stacy Trebing, 46. The foundation assists transplant patients and their families.

Katie, a junior varsity field hockey player who once wasn’t let outside to avoid germs, said her past experience affects how she thinks about life now.

“I feel like I should just not take it for granted and try every day,” she said.

In July, Katie and her mother met a 3-year-old girl from Singapore who had thalassemia, a blood disorder with similar treatment options as DBA. Like Katie, she received a bone-marrow transplant from a brother who was a perfect match. The girl’s mother had read a book about the Trebings, “The Match,” by Newsday reporter Beth Whitehouse and was so inspired by it she even used the same transplant doctor Katie had, Stacy Trebing said. The two families are still in touch and exchange pictures over email.

Katie must still go for blood work and checkups every six months, which she’ll have to do for the rest of her life. Due to the chemotherapy needed to prepare for her transplant, she is at a higher risk for heart and lung issues and early cataracts. Fortunately, she hasn’t experienced any health issues in a while that might keep her or her family from their commitments and their efforts to help others.

Every week, Katie goes to a local homeless shelter to tutor kids. She also helped out this summer at Kidz Charity Productionz, an organization that raises money for children with serious illnesses. Her older brother Calvin, 17, has worked with the charity for the past few years.

The Trebing kids also have taken part in charity runs, including one for Make-A-Wish, which funded a trip for Katie 11 months after her transplant.

Stacy and Steve think their personal desire to give back comes from all the help they received when Katie faced the roughest stages of her illness. One fundraiser, for instance, collected $20,000 before Katie’s transplant.

“Once you are the recipient of so many other people’s generosity, we feel we have to give our fair share back,” Steve said. That mentality has rubbed off on the kids, he said.

Katie already knows she wants to eventually become a surgeon because she wants to help people. She thinks part of the reason may also be her medical history, she said.

Perhaps the greatest help the Trebings can offer is information and inspiration for people going through similar difficulties, whether through the national media attention they’ve received or by meeting other families. The family was the subject in 2007 of a five-day Newsday series chronicling their quest to cure Katie.

“Over the years, probably 10 or more people have reached out with questions who’re going through similar things,” Stacy said.

Originally, Steve wasn’t a big fan of their family’s personal life going public, but he now plans to begin writing a book next year from the Trebings’ perspective.

“In the end I’m happy,” he said. “It’s helped many, many people.”

With Beth Whitehouse

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