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."
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."
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.