'Saving Henry': Little Boy's Life Inspires New Hope

March 11, 2010— -- Henry Strongin Goldberg was born with an oversize spirit and a fascination for superheroes. He also was born with Fanconi anemia, a rare and deadly disease no medicine could cure.

Henry's life was spent in and out of hospitals, but his positive attitude was unwavering. After Henry died at age 7, his parents created a foundation in his honor to help children living with serious illnesses. His mother, Laurie Strongin, has also written a new book about Henry and the family's experience, called "Saving Henry: A Mother's Journey."

"I really started to tie the whole story together after Henry died," Strongin told "Good Morning America" anchor George Stephanopoulos today. "In some ways the most poignant parts of the book…I wrote after he died."

At the same time, she said writing the book gave her the chance to remember the good times she shared with her son.

"His death seemed so irrational in the face of this exuberant child … it was so beautiful to revist that part of his life. I miss him so much."

Henry's Story

When Henry was born in 1995, doctors told his parents that he might never reach kindergarten.

Fanconi anemia, named for the Swiss doctor who first diagnosed it, is a genetic disease that causes heart problems and various cancers. The bone marrow of children with the disease ultimately fails sometime between the ages of 12 months and 12 years, which means the chance of developing acute leukemia suddenly increases 40,000 times.

Henry was always smaller than other children -- even his younger brother Jack gained on him in size -- and his parents knew that at some unknown point their son would develop acute leukemia. But for much of his life, Henry was a normal, happy child.

"He was an incredible child … just so happy and filled with love of life," Strongin said on "GMA." "He knew how to live and to find the joy in every day."

"The best coping mechanism is being around Henry ... because Henry is just amazing," his father, Allen Goldberg, told ABC News in a 2002 interview for "Nightline." "You cannot be sad around him. You cannot be angry about the hand we've been dealt when you're around him because he has that sunny disposition all the time."

CLICK HERE to read an excerpt of "Saving Henry" and CLICK HERE for family photos.

CLICK HERE to learn more about Hope for Henry.

CLICK HERE to visit Allen Goldberg's blog, Dear Henry.

Hoping for a Future as a Family

Henry's best hope for survival was a bone marrow transplant from a close genetic match. His parents, in an attempt to save his life, traveled to the edge of science and morality with a plan to genetically engineer a perfect donor for their son.

They put their hope in a new procedure called preimplantation genetic diagnosis, which allowed them to choose and implant embryos without Fanconi anemia. Laurie Strongin would then undergo in vitro fertilization and try to bear a child whose bone marrow would be a match for Henry.

Doctors would then use stem cells from the new baby's umbilical cord to create bone marrow for Henry.

"It was the silver bullet," Strongin said at the time. "It solved all of our problems. It gave our family a future together, basically."

But the ordeal would prove complicated, costly and controversial. In the summer of 2001, when ABC News first began following Henry's story, the controversy over stem cell research had made headlines.

When Henry's story appeared in The New York Times Magazine, it struck a nerve. One reader wrote: "It seems like a mental illness has overcome these parents and 'saving' a genetically defective, not savable child has taken over decency, reason, and all sense of morality."

The couple had always planned to add to their family, and Strongin said this was simply "a way to have a child who we knew would be healthy. ... I think it's of value to Jack and to whatever baby might have been produced through this process to be born into a family that didn't suffer such a tremendous loss. That's good for that child. This is not just something that's only good for Henry. It's good for our whole family."

The couple had conceived Henry and Jack naturally, but Strongin tried nine times to become pregnant again through in vitro fertilization, and nine times it failed.

In the spring of 2000, Henry began to get sick more often. When he developed a major infection, his doctor advised the family that time had run out, and it would be a risk to wait any longer.

As a last resort, the family tried a bone marrow transplant from an anonymous donor at the Fairview University Medical Center in Virginia, but Henry's body rejected it. He died a short time later at just 7 years old.

After Henry's transplant, the couple conceived a son, Joe, naturally. He is free of Fanconi anemia, but was not a match for Henry.

Hope for Henry

Today, Strongin says their family doesn't regret everything they went through trying to save Henry's life.

"How could you not [try]? The only hope for Henry was for us to have another child that would be healthy," she said on "GMA." "We were early pioneers … [preimplantation genetic diagnosis] is working and it's saving lives."

In her eulogy for Henry, Laurie Strongin spoke of all that she'd learned from her son.

"Henry taught me what was important and what just didn't matter at all," she said, "And he taught me to savor each moment; to love; to laugh and to dwell in possibility."

That spirit of possibility led to the creation of Hope for Henry, a foundation to improve the lives of children with serious illnesses.

"When Henry passed away, Laurie did something that many parents can't do," said Dr. Aziza Shad, at the Lombardi Cancer Center, "which is get up in the morning and decide that she was going to make the lives of other children better."

The foundation recently hosted a superhero party at the hospital where Henry spent countless hours. It honored Henry's legacy and brought smiles, laughter and hope to children and families alike.

Tamara Karnes, whose son Dylan is a patient at the hospital, was moved to tears.

"To know that through all of this cancer and all of this sickness ... it touches my heart to know that these people care," she said.

CLICK HERE to read an excerpt of "Saving Henry" and CLICK HERE for family photos.

CLICK HERE to learn more about Hope for Henry.

CLICK HERE to visit Allen Goldberg's blog, Dear Henry.