Thursday, December 12, 2002

From: Nightline []
Sent: Thursday, December 12, 2002 1:46 PM
To: Nightline Mailing List
Subject: NIGHTLINE: Henry's Story

TONIGHT'S FOCUS: The story of a family who did everything that they could,
and everything that science offered, to try to save their son from a fatal
disease. In the process they ran smack into the cross hairs of the
nation's stem cell debate. Using embryos for medical research ceased to be
an abstract ethical debate for Laurie and Allen and became a life or death
struggle for Henry.


Most of the time when you turn on the television or open a magazine or
newspaper to read about new medical treatments, you will see the success
story. The first person who got a pacemaker and lived, or the first set of
conjoined twins to survive separation surgery. But for every breakthrough,
there are many more patients who undergo experimental treatment only to
see it fail. But even though the treatment fails, the patient still plays
an important role, and offers a generous gift to our overall understanding
of science.

Tonight Nightline's John Donvan will introduce you to just such a family.
Laurie Strongin and Allen Goldberg did not seek the role they played in
medical research. They found themselves there unexpectedly in 1995 when
their first born, Henry, was diagnosed with a rare and deadly disease
called Fanconi Anemia. Immediately, they were thrust onto the frontlines
of medical research. Before Henry was a toddler they found themselves in
the middle of a debate that would soon grip the nation over embryonic
tissue research.

But for Laurie and Allen there was never a debate. Doctors told them that
the best hope for Henry's future lay in a bone marrow transplant from a
sibling. A perfect match. So Laurie and Allen went about trying to create
just such a child through a cutting edge new medical technology that could
determine with only a handful of cells whether an embryo would grow to be
a baby free of the same genetic disorder as Henry, and also a perfect
match for a transplant. A new baby who would save his or her older

Perhaps this story will sound familiar to you. Nightline first aired
Henry's story last February. Tonight we choose to rebroadcast it because
we learned yesterday that Henry, Laurie and Allen came to the end of their
valiant struggle. Henry Strongin Goldberg passed away last night in his
mother's arms. He was seven years old.

We hope you will tune in tonight to see one family's story - where love
and science intersect.

Thursday, December 12, 2002

Sara Just and the Nightline staff
Nightline Offices
Washington, D.C.

From: Nightline []
Sent: Friday, February 08, 2002 1:08 PM
To: Nightline Mailing List
Subject: NIGHTLINE: Henry's Story: Going to the Edge of Science

TONIGHT'S SUBJECT: It's easy to debate medical ethics when it's not about
you, not your loved one fighting for his or her life. One couple pushed
the medical, and ethical, limits in an effort to save their son. Their
story raises all sorts of complex and somewhat troubling issues, but can
you fault them for trying to save their son? A very personal look at a
difficult story.


Today’s Nightline email was written by correspondent John Donvan:

Hello, Leroy fans. L is fine, but this morning at 9:16 precisely,
he dropped me the following line (via our in-house email):
“I would love it if you would write today's email.”

He’s the boss, so here I am. If he wants a day off, so be it.

Actually, Leroy is here at work today, fit and fine, and the real reason
he’s handed over to me is that he knows I have a personal
connection to tonight’s report, which may be worth sharing.

The little boy who is the subject of tonight’s program is named Henry, and
last year he was in the same nursery school class as my own little boy.

Actually, Henry was there in name only. They kept a cubby ready for his
jacket. They talked about him often. They marked his birthday. But Henry
never showed up.

He was at home most of the time. And when he wasn’t at home, he
was in the hospital. He has a disease called Fanconi anemia, and,
as I explain in the tonight’s report, it is a child killer.

That entire year they kept Henry’s cubby ready in my son’s class, I never
once met him. The truth is, I never really asked a lot of questions about
Henry. I never talked with my son about him. I recall that when the hat
was passed to raise funds for one of his many operations, my wife and I
wrote a check. But Henry, the boy, was an abstraction to me.

It was only after one of our senior producers spotted a piece about Henry
in the New York Times, and asked producer Peter Demchuk and me to look
into whether there might be the germ of a good Nightline report there (and
at that point none of us knew the kid in the Times article was the same
kid who was enrolled in my son’s class) that I had introduced myself to
Henry and his parents. Meeting them reminded me, once again, how easy it
is to turn other peoples’ lives into abstractions - to see nothing of your
neighbor’s dreams and struggles.

Henry, it turns out, is an energetic, funny, scrappy, resilient little
boy. His parents are bold, tireless, inventive and bursting with love for
the son whose life they will do almost anything to save. You spend some
time with all three of them (there are two other boys in addition), and
you come away feeling they deserve a medal just for how wide they smile.

But theirs is also a tough story. There has been a lot of real pain,
physical and emotional. This is not one of those stories that promises a
miracle cure.

In fact, the thread of tonight’s report is how Henry’s parents attempted
one particular kind of cure that was riddled with controversy - not just
medical, but also ethical, with many overtones of the arguments we have
all heard swirling lately over stem cell research and the use of fetal

Those arguments often, for most of us, lapse into abstractions,
hypotheticals, what-ifs. But for Henry’s family, none of this is abstract.
Facing life or death, they had to make real choices, and they did.

Watch tonight. Meet a great kid. Not an abstraction.

Friday, February 8, 2002

John Donvan
Nightline Offices
Washington, D.C.