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Sunday, February 14, 2010

Henry’s Story: A Young Boy’s Life in Glover Park

This story appeared in the February issue of my neighborhood newsletter, the Glover Park Gazette.

Henry’s Story: A Young Boy’s Life in Glover Pa rk
By Susanna Barnett

The memories of Henry Goldberg’s short life extend across Glover Park. His photo brightens the walls of Max’s ice cream shop, a brick at Guy Mason’s playground is dedicated by Henry and his brother to their father, and a plaster cast of Henry dressed as Superman greets visitors at nearby Georgetown University Hospital’s Lombardi Cancer Center.

“His whole life took place in this neighborhood,” said his mother, Laurie Strongin.

It seems appropriate that Laurie wrote a memoir about Henry and the struggle to save him from a deadly disease while she sat in Glover Park’s coffee shops and sometimes at her own kitchen table on Calvert Street. Saving Henry documents Henry’s journey as a new medical field unfolded, but more than that, it captures a little boy’s courage and laughter as he and his family faced insurmountable odds.

“It is very much a love story about this inspiring kid,” Laurie said with a warm smile over coffee. “It is a good lesson to see the difference one child can make. It is pretty extraordinary.”

Two weeks after Henry born in 1995, he was diagnosed with Fanconi anemia, a rare genetic disorder that affects only 1,000 people in the world. Laurie and her husband Allen were among the first to try a new scientific process that combined in vitro fertilization with genetic testing to produce a sibling who could be a stem cell donor for Henry. However hurdles from Congress and nine unsuccessful IVF attempts led Henry to receive a stem-cell transplant from the bone marrow of an unrelated donor when he was four years old. The treatment was unsuccessful, and Henry died in 2002 at age seven.

Laurie started writing about the family’s experience soon after beginning the first IVF treatment. The process they embarked on was cutting edge at the time, and there was no information available to guide her. Writing about it allowed Laurie to feel like she was helping others who would go through the same grueling ordeal, she said. For over two and a half years she filed away her musings, sending some to friends and family through e-mails to keep them involved in Henry’s struggle. After he died, writing about Henry became cathartic.

“One of my ways to spend time with him was to write about it,” said Laurie. She eventually left her job at Fannie Mae to serve as executive director of the Hope for Henry Foundation, which she and Allen founded to provide gifts and programs that entertain hospitalized children with life-threatening illnesses, and to weave her collection of writings together. Laurie hopes Saving Henry helps others as they face seemingly insurmountable challenges.

“It is inevitable that we are each going to face challenges in our life,” Laurie said. “This is a good reference. This is a story about how we navigated our hardship.”

The book also shows how Henry viewed his medical treatment as something he needed to do to get back to the fun part of life. “It is like he laughed in the face of danger,” she recalled. Henry showed his family and friends that no matter what the situation, he could be upbeat. On his third day of treatment for the bone marrow transplant at the University of Minnesota Children’s Hospital, a nurse came in to give Henry yet another IV. “Bring it on!” Henry cried, as he raised his toy sword. When he lost his hair due to chemotherapy, he said, “Hey, I look like Michael Jordan!” Henry charmed his medical team both in Minnesota and at Georgetown, once charmingly asking a nurse at the Lombardi Center on a date to Cactus Cantina.

In between many long and lengthy hospital visits, Henry was active in Glover Park, usually wearing his beloved Batman costume and playing with his brothers, Jack, a year younger than Henry, and Joe, six years younger. He climbed the slides at the Guy Mason playground, ate pizza at Faccia Luna, and of course, loved visiting Max’s, especially after Henry’s Stoddert Soccer team, the Dolphins, won a game.

“He was really fun—very high spirited and inspirational,” Laurie said. “It turned out he was made of something special. And he was like that the whole way through.”

Saving Henry will be released on March 2. Laurie will read and sign book at Politics and Prose on Sunday, March 7 at 5 p.m. Additional book-reading events and pre-ordering information for the book can be found at www.savinghenry.com

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