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LAURIE STRONGIN, HENRY'S MOTHER
Fanconi anemia. Rare. Fatal. Henry.

TED KOPPEL, ABC NEWS
(Voice Over) A child's courage in the face of a rare disease.

TED KOPPEL (CONTINUED)
(Voice Over) And a mother and father's hope in controversial medical research.

LAURIE STRONGIN
I am left with my belief system intact. I believe in love and science. Nothing more, nothing less. I believe that we can't control everything, no matter how good it sounds or looks on paper. I believe it's the parents' responsibility to care for and protect their children, especially when the stakes, a chance at life, are so very high.

graphics: Henry's Story

TED KOPPEL
(Voice Over) Tonight, "Henry's story", a lesson in the limits of what love and science can achieve.

graphics: ABC News: Nightline

ANNOUNCER
From ABC News, this is "Nightline." Reporting from Washington, Ted Koppel.

TED KOPPEL
(Off Camera) A little over ten months ago my colleagues Chris Bury and John Donvan, brought you a story about a little boy, Henry Strongin Goldberg, who had a rare and deadly genetic disorder. The fact that Fanconi anemia is rare suggests that most of you had never heard of it before. The fact that it is deadly, presupposes the outcome. Still, back in February, our story had at least a glimmer of hope. That hope lay in the remote possibility that his mother, through in vitro fertilization, could become pregnant again. And the bone marrow from this infant brother or sister would be compatible and could be used to effect a cure of what has previously been incurable. The mother tried, Lord knows how she tried, nine times, to become pregnant through in vitro fertilization. Nine times the effort failed. Ultimately, she did conceive, through the natural process, giving birth about a year ago to another little boy. His bone marrow, however, was not compatible. Another bone marrow transplant was attempted from an anonymous donor. Henry's body rejected it. Throughout much of this long ordeal, Henry's father, Allen, maintained a website to keep family, friends, and those among you who cared, abreast of what was happening. Last night, at 7:22, Allen posted this final, devastating message. "At 6:40 PM, Henry Strongin Goldberg died. I removed his breathing tube and his heart stopped beating, while Laurie," his mother, "held him in her arms on a rocking chair in his room." That is the end of the story. But John Donvan felt very strongly that we should use the occasion to retell the events that led up to that moment. It was a long and courageous struggle. And even though you now know that it was unsuccessful, curing what was once incurable becomes possible only through a succession of stories like Henry's.

JOHN DONVAN, ABC NEWS
(Voice Over) Henry Strongin Goldberg was born in October of 1995, which makes him, at this point, six years and just a few months. And here is some of what Henry has learned about life so far. He's learned that Batman always wins and the Joker loses. He's learned that for some reason, it's real easy to pin down his dad when they're wrestling. And he's observed that even when you really whack a whiffle ball, it never travels quite as far as you think it should.

JOHN DONVAN (CONTINUED)
(Voice Over) What doesn't Henry know? He doesn't know that when he was born, the doctors said he might never reach kindergarten. Or that even with all the medicine he takes, and sometimes it puffs up his face, no medicine can yet cure the disease he has. Or that in the attempt to save his life, Henry has traveled to the edge of science, where the rules of what's morally right and morally wrong are still being written. Henry's family set course for this uncharted territory on the October day that he was born.

LAURIE STRONGIN
They handed him to us and, you know, I'd had a C-section, so they sort of handed him up to me and Allen. And when they did, the doctors and we simultaneously noticed that he had just an extra sort of joint of his right thumb. And they whisked him away to look at him more closely because that's a common genetic defect.

JOHN DONVAN
(Voice Over) It wasn't just an extra thumb. Henry was born tiny. And his heart was not working properly. He would need an operation. But a genetic test showed it was much worse than that.

LAURIE STRONGIN
And so, Allen called and, basically, the doctor was in shock and had just gotten the results back. And he told us that Henry had Fanconi anemia.

JOHN DONVAN
(Off Camera) Had you ever heard of it before?

LAURIE STRONGIN
Never. No. No.

JOHN DONVAN
(Off Camera) Fanconi anemia, named for the Swiss physician who first diagnosed it, a genetic malady that attacks children in so many different ways, the heart, cancers of the head and the neck and the mouth. And anywhere between the ages of 12 months and 12 years, the bone marrow fails, which means the chances of acute leukemia suddenly increase 40,000 times. Fanconi anemia, in short, is a child killer. And in a journal that Laurie began keeping, she admitted to herself that her baby boy, Henry, was in the worst sort of trouble.

LAURIE STRONGIN
Fanconi anemia. Rare. Fatal. Henry. I'm sad. I don't feel sad, I am sad. And it's real and it's forever. Now, what do we do?

JOHN DONVAN
(Voice Over) Family photos and home movies from early in Henry's life.

ALLEN GOLDBERG, HENRY'S FATHER
I would say, probably the best coping mechanism is being around Henry. 'Cause Henry is just amazing. And you cannot be sad around him. You can't, you know, be angry about the hand we've been dealt when you're around him. Because he has the sunny disposition all the time.

JOHN DONVAN
(Voice Over) But still, that first year, Allen and Laurie had to see their baby through open-heart surgery.

ALLEN GOLDBERG
There are tubes coming out everywhere. They're swollen, they're, catatonic. It's pretty scary.

JOHN DONVAN
(Voice Over) But what's remarkable about kids this age is how quickly they can recover from something like a heart operation. Henry spent less than two weeks in the hospital.

LAURIE STRONGIN
Five more days in the step-down unit and then we were home and it was like nothing happened. He was totally fine.

ALLEN GOLDBERG
And then he was again back to being a normal kid. Didn't get sick. He was, fine.

JOHN DONVAN
(Voice Over) And that is one of the things about Henry. For most of his life, other than the fact that he is decidedly smaller than other kids his age, even his younger brother Jack is gaining on him, he's looked and felt like a kid with nothing especially wrong with him. But there was always a clock ticking in his parents' head. They knew that unless something were done, leukemia was inevitable, which meant Henry would not live out his childhood.

JOHN DONVAN (CONTINUED)
(Voice Over) And then they heard that maybe there was a way, after all, to save him.

LAURIE STRONGIN
For us, it was like, the silver bullet. It solved all of our problems. It was like, it gave our family a future together, basically.

JOHN DONVAN
(Voice Over) All they knew at that point was that a new medical technology was offering another hope for Henry's life. It would also be complicated, costly, and controversial.

graphics: Nightline

ANNOUNCER
This is ABC News "Nightline," brought to you by . . .
commercial break

graphics: Nightline: Henry's Story

JOHN DONVAN
(Voice Over) This summer, around the time we first began videotaping scenes of Henry and his family, and September 11th was still in the future, the weightiest decision before the President was whether to support stem cell research, research that would require destroying human embryos. One of the key questions, as the President put it, is whether it is morally acceptable to regard human life as something you make use of.

GEORGE W. BUSH, US PRESIDENT
First, are these frozen embryos human life and therefore something precious to be protected? And second, if they're going to be destroyed anyway, shouldn't they be used for a greater good? For research that has the potential to save and improve other lives?

JOHN DONVAN
(Voice Over) In the midst of this debate, which dominated the news in the pre- September 11th world, Henry's father, Allen, published an article in "The New York Times," calling for more research, and expressing his gratitude for past research on human embryos.

JOHN DONVAN (CONTINUED)
(Off Camera) And when you hear the next part of Henry's story, you can understand why his parents were willing to go as far as science could take them. Because Allen and Laurie, in an effort to help Henry, had already embarked on a path that involved, some would say, making use of a human life. They saw it not as some abstract ethical issue, but simply as their best shot at saving their son's life.

JOHN DONVAN (CONTINUED)
(Voice Over) And it was this, while Henry was passing his third birthday and his fourth, and approaching his fifth, his parents knew the day was approaching when leukemia was likely to set in. The known treatment was a bone marrow transplant. And the best hope for that to work was to find a bone marrow donor who was a close genetic match for Henry. Now, Henry's life at this point was already a constant series of visits to the doctor.

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