'Brave and hopeful and strong' District child loses battle against genetic disease

by Debra Rubin

Mommy, this is a very bad last night of Chanuka." Those were the last words Henry Strongin Goldberg said before being put on a ventilator. And his last words ever.

Just days later, on Dec. 11, Henry lost his battle with Fanconi anemia, a rare genetic disease, dying from complications of a bone marrow transplant.

He was 7.

A District resident, he had spent nearly the last six weeks of his young life at Fairview-University Medical Center in Minneapolis. It was at that hospital that he had had the bone marrow transplant 2 1/2 years ago, a procedure that his parents, Laurie Strongin and Allen Goldberg, had hoped would allow their son to live.

He was an "amazing" child, said Strongin, in good spirits -- despite a life of blood tests, surgeries, transfusions and chemotherapy. Until the last two weeks of his life, "he was indomitable," said his mom, "just brave and hopeful and strong."

He loved Superman, Batman, Pokeman and Disney World, and had attended kindergarten last year at the Jewish Primary Day School in Silver Spring. This year, he began first grade at the school, but then as his health declined, he switched to home schooling. Earlier, he had attended the Gan Hayeled at Adas Israel Congregation in the District, where his family holds membership.

His brother, Jack, was born in late 1996. His parents had hoped he would be a genetic bone marrow match for Henry. He wasn't, but became his big brother's companion.

Strongin and Goldberg decided to try in-vitro fertilization, trying to produce an embryo that would develop into a child with a perfect genetic match. They gave up after nine failed attempts at pregnancy, and were featured in a July 2001 New York Times Magazine article about the controversial procedure and the medical journey they were taking with their son.

Henry was also featured on Nightline.

The family sought an unrelated marrow donor. In April 2000, WJW featured an article about Henry and bone marrow testing drives being held locally in hopes of finding a donor.

In July 2000, he had the transplant.

"We tried everything we could," said his mom. "We don't have any regrets."

Somehow, she said, "we were able to enjoy every minute of every day. While we didn't take it for granted that we were going to have a long life together, at the same time, we didn't really believe Henry would ever die."

Meanwhile, 14 months ago, the couple had a third son, Joe, conceived, as Strongin said, "the good old-fashioned way."

Joseph's genetic make-up did not match Henry's, but he and Jack are matches for one another. "They'd better not need it in my lifetime," said their mother.

She and her husband hope to set up a foundation in Henry's name that will do research on Fanconi anemia.

Meanwhile, they ask that contributions be sent to the Fanconi Anemia Research Fund, 1801 Willamette St., Suite 200, Eugene, OR 97401.

Survivors also include Henry's grandparents, Ted Goldberg of Rockville and Pat and Sy Strongin of the District.

In a eulogy that Laurie Strongin wrote for her son, she said, "Before he could even smile or talk, Henry taught me what was important and what just didn't matter at all; and he taught me to savor each moment; to love; to laugh and to dwell in possibility."

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Copyright 2002, Washington Jewish Week
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(301) 230-2222

laurie and i went to henry and jack's school yesterday. jack acted like he always does when we bring him to school. he just jumped in without even a "goodbye" to mom and dad. then laurie and i visited henry's classroom. his desk has his name on it and all of his stuff still inside. it is very lonely. the school is going to ceremoniously remove the desk after the first 30 day mourning period to give the kids closure. inside henry's desk was a drawing that he made for bella. he had written her name and his.

on henry's birthday, his present was to go to the patagonia store in georgetown and pick out some things to keep him warm. henry just loved the hat, vest and coat he picked out and wore them all the time. i mean all the time. i even bought him long underwear and he took to wearing the top and bottoms as clothes. every day. from his birthday in october to the time he went to the hospital in minnesota he was either naked or wearing the patagonia long underwear. for the last night of hannukah i bought him a new long underwear top with a zipper at REI. he kept asking me how come i had tops with zippers and he didn't. a hint, perhaps. laurie was staying at the hospital that night so i gave the top to her to give to henry. laurie said that henry was so excited when she gave it to him. he told her to touch the fabric because it was so soft. i was fortunate enough to see him in the top that next morning when he went into septic shock. they removed it just before he was intubated.



on henry's birthday he was in isolation at our house because his immune system was so suppressed. friends of nana pat decided they would hire a magician to entertain henry and jack. this was henry's birthday party. he was too busy having fun to feel sorry for himself that he couldn't have friends come over. i think the smiles speak for themselves.







tonight is the last night of shiva at our house. in silence tomorrow laurie and i will blow out the candle that has burned for 7 days. we then go for a walk around the block to mark our return to the community. around the block where henry rode his bike. around the block where henry first felt snow. around the block that carried us so many nights to max's ice cream. i am going to have to learn to walk without him.

today or tomorrow laurie is planning to send out an email to our email list asking anyone who has something to share -- henry story, funny anecdote, whatever -- to email them to us. laurie's email is lstrongin@starpower.net and mine is allengoldberg@starpower.net .

i went out to our minivan for the first time since getting back and found a treasure trove of henry's tchotckes stuffed in the pocket behind the front passenger seat. it reminded me of a whole bunch of things that henry loves. thank goodness he was such a pack rat. i think i'll be making discoveries of henry's treasures for months to come.

normally, i couldn't/wouldn't step out of our house and away from henry without my cell phone. i lost it in the confusion of our return from minneapolis last week and i'm in no particular hurry to hunt it down.

we're now taking jack to his and henry's school in a little visit. we are just going over to say "hello." i don't know how this will affect jack. i think it is going to be great for jack to see his friends and equally hard for laurie and me to see henry's classmates and teachers. jack appears pretty okay by day, his usual ebullience is just slightly deflated. a lot of jack's friends come over to visit, and has been going out for fun times with friends and family and their kids. it is at night when jack has the most trouble. this former king of snoozing two seconds after tuck-in has found that he cannot get to sleep. to help him fall asleep we've had he come in bed with us and another night laurie snuggled with him until they fell asleep together in the top bunk of the bunk bed that henry and he shared.

here is a photo that i just took of jack with his lego creations of the past few days. laurie and i have been giving him his birthday presents without waiting until his real birthday. he was afraid that he was going to have to celebrate his birthday in minnesota.

Rabbi Justin David
Congregation B'nai Israel
Northhampton, MA
Remarks at Henry's Funeral
Friday, December 13, 2002

Laurie, Allen, Jack, Pat, Sy, Ted, Abby, Andrew, Andy, Tracy, Jennifer, Dan, what is there to say? So much has already been so eloquently expressed by you, Laurie and Allen, through your e-mails, through your editorials, through your boundless acts of strength and compassion, and, most of all, by the rich, courageous, vibrant life of Henry Strongin Goldberg. In a sense, what is incumbent upon all of us to convey to you is quite simple - that we love you, that you are not alone, that Henry’s life and your life is testament to a source of compassion and strength that exists outside of us and through us simultaneously.

After your loss, our loss of Henry, our task is to attend to those regions of the mind and heart where Henry continues to live. Our scriptures teach us, that the human soul is the candle of God. Just as divine energy, divine love, divine compassion reign eternal, symbolized for us in the eternal light in every synagogue, so that bit of love, compassion, that spark that animates us, lives on. Our task now, is to reflect on Henry’s remarkable life, and to sense Henry’s continuing presence, like a candle whose flame appears to be extinguished, but whose light continues to give off warmth and radiance.

Henry was a light to all of us - to those of us who were involved in the intimate details of his day to day care, to those of us who are his family, to those of us who are intimates of Laurie and Allen, to his teachers, friends, parents of friends, members of this community, of work community - anyone who was touched by the life of Henry Strongin Goldberg. Henry warmed us with his courage. He inspired us with his strength. He delighted us with his spirit. Henry imparted the life that comes with hope - in just his being a kid and partaking of the pleasures of childhood.

It was Shelley Remer who first told me about Henry. Fighting back the tears, Shelley told me about the little boy in Elaine Berman’s class who would most likely have to have a bone marrow transplant. Shelley told me that I could pick him out immediately, because he was always wearing a Batman costume. And she was right. There was Henry, the first time I met him, eagerly and purposefully putting away blocks, wearing his Batman costume. I introduced myself to the kids in the class, whereupon Henry looked me right in the eye, pointed at me, and said, “You’re Mr. Ratburn,” a character from Arthur. As a parent, you learn to see the world through your child’s eyes based on how he or she plays. And even from this first glimpse, without all of Laurie and Allen’s reminders of how much Henry loved Pokemon, and superheros, it was clear that Henry saw the world as a place to embrace and to explore.

There are two stories that Laurie and Allen shared with me last night that I feel particularly compelled to share with you as a rabbi, because they exemplify the love and compassion that was so present in Henry’s life, and that can imprint Henry’s lasting presence upon our hearts. Many of you know of the love Henry had for his Sunflower teacher, Liani, and in particular, for her daughter, Bella. This summer, Bella was in a ballet performance, and Henry had to be there. The day of Bella’s performance, Henry woke up, cast aside his usual kid clothes for a pair of khaki pants, a yellow button down shirt and a blue blazer, came downstairs, and sat, all dressed, for two hours, until it was time to go to the performance. At one point, Laurie said, “It’s time to go,” And Henry said, “Wait. I have to get her flowers.” And to hear Laurie tell it, Henry sat transfixed throughout her performance, as if Henry was watching the love of his life.

Many people remarked how Henry was a help to younger siblings. It was approximately a little over two years ago, at the time that Henry was about to return after his transplant, that a family at the Gan here at Adas Israel suffered a terrible tragedy, when a man died suddenly, leaving his wife and two small children. Simon, one of the children, had the blessing of being one of Henry’s closest friends. Henry said to Allen and Laurie, “I want to make him feel better. I want to talk to him about his daddy.” And so, at a time of fragile recovery, when the world had closed in on Henry and was slowly opening back up, Henry called his friend.

If only we could embrace each opportunity for living so completely, that we could express our love so simply and so spontaneously. To the extent that each of us strives to live with great er compassion and tenderness, we embrace Henry’s living presence in us.

Our tradition is wise in recognizing the profound degree to which we absorb the influences of parents and all who care for us. Henry’s love, his wisdom, his joy, his vitality were uniquely his, but they were also learned, and so in remembering Henry, we have to remind ourselves of the extraordinary accomplishment s of Laurie, Allen, Jack, family, Pat, whose constant presence and energy defy description. Laurie and Allen, you recalled to me last night, with great admiration, how Henry endured what he had to endure with steadfastness, never complaining, even though he had every right to moan until the end of time. I think I speak for everybody here when I reflect on how remarkable it is that, through disappointment, pain and great darkness, not once did you ever show any bitterness. We would love you all the same if you had, but the two of you must have made a remarkable internal decision that you were going to greet every challenge with a sense of purpose, with love and compassion, and with hope. For 7 years, you lived a life of no limits, because your love for Henry was boundless, and so your efforts to keep him alive were boundless.

Jack, I hope that you feel proud, that you loved and will always love your big brother, who loved and will always love you. Henry loved you, Jack, simply because you were his brother, his best friend given to him by your parents, because your kind and considerate toward him, because you played with him and watched TV with him. The greatest thing any of us could ask for is a best, best buddy. When we grow up, that best, best buddy might be our husband or wife, friend, but when we are kids, that best buddy should be our brother. And Jack, you were Henry’s best buddy, the greatest thing he could ask for.

In my synagogue in Northampton, MA, we have a pamphlet titled, “Do Jews believe in the soul’s survival?” For me, having been blessed to know Henry Strongin Goldberg, the answer is undeniably clear. In all the concentric circles of relationship, love, support, that existed and blossomed around Henry Strongin Goldberg for 7 years, Henry’s flame, God’s little candle of vibrant intensity, illumines our lives. Any child who benefits from new treatments to fight FA will do so because of the fight Henry made. Any physician or researcher motivated to explore the lastest therapy will do so because of Henry’s brave example. Already, Laurie and Allen can tell you about children who have benefitted from Henry’s example.

Henry will live on in the heart of every child who will be inspired by Henry’s life, directly or indirectly, to live more sweetly - with more vigor, compassion and imagination.

Henry will always be alive for we who regarded him with love and admiration.

And, Laurie, Allen, Jack, for 7 years your lives have been Henry’s life, so intricately intertwined. God’s candle that was given to you for too short a time has already ignited additional flames within you that nothing can extinguish.

It is our tradition to bestow these humble words upon mourners - Ha-Makom yinachem. Rabbi Harold Kushner struggles with what these words mean in the face of tragedies such as yours. Instead, he looks for comfort in the following questions: How do we respond? What do we intend to do? Are we capable of loving, in a world that has disappointed us? With all of its imperfections, are we capable of loving a world, because it does bestow its measure of beauty and goodness? And can we love ourselves and the people around us, even though none of us is as strong as we would like to be?

May these questions be the beginning of some solace and healing. Ha makom yinachem - may the love of all of us here, and those not here, of family, friends, teachers, doctors, children, admirerers, lifetime friends of Henry, give you a glimplse of the ultimate love, that brings true comfort.

Y’hi zichro baruch - may Henry’s memory be an eternal blessing for all of us.

Henry's grandmother, "Nana Pat," a.k.a. Laurie's mom, wrote this and read it last night at the Shiva.

Henry Strongin Goldberg’s Tale
A fable for all time – a tale of love, courage, determination, life, compassion, respect, laughter and love

Born of love, a life of love, and a memory of love

A lifetime lived in only seven years, one month, two weeks, and two days

Oh, too short, but filled with zest, fun, the love of many, happiness, adventures, - as a friend of ours said, a life filled with more experiences than many centenarians can count

Henry taught those of us, including so many in this room, the value of love, truth, courage, ability to adapt, and fun

Recently, I had the good fortune to take Henry and Jack to see the most recent Star Wars movie. When Henry came home and was asked what he liked most about the movie, he told Laurie that Yoda was his favorite, because he was small, fast and wise. Just like Henry,

Climbing trees, exploring the secret passage, playing hide and seek. Playing with his beloved aunts and uncles and cousins. Henry was so fortunate, he even had two uncle stinkies or actually one Uncle Stinky and one Uncle Poopy. Winning at chess – he even beat Uncle Peter, who Henry suggested needed more practice – winning at endless games of war, teaching Jack the ways of the world, wrestling with Jack like they were Siamese twins, finally mastering a running somersault on the beach, driving the tractor at St. Michaels with Papa Sy, spelling Papa Sy’s name at the family Chanukah party, catching his first fish, taking responsibility for flushing his lines and giving himself his medication, sitting in that chair as he was wheeled in for his radiation treatment and singing songs, being with Grandma Phyllis and Papa Teddy, patting Joe Joe on the head with so much love – paddling the kayak, listening to stories (not encyclopedic facts like Jack liked), climbing trees, repelling rock walls with Debbie Blum, doing Tae Kwan Do, reciting all the lines from his favorite movies, laughing at his favorite parts over and over, loving Bella, going to Disney World, and loving his mommy and daddy, and Jack and Joe.


But at the root of this Superhero was Henry’s good fortune to be born to Laurie and Allen, who with their endless bravery, respect for Henry and his life, love, devotion, advocacy for Henry, hope for Henry, fun-loving spirits, souls and willingness to share Henry with all his family, friends and the world .


When Henry was born, Sy and I determined to celebrate every day of his life. I was especially lucky to have been given the gift to walk the road with Laurie, Allen, Henry, Jack and Joe – the greatest gift Laurie and Allen could have given me.

There is a traditional Hebrew blessing Zichrono liveracha – His memory will be a blessing.

The Goldberg Strongin family thank you for being here, for your love and for sustaining Laurie and Allen, Henry, Jack, and Joe through Henry’s journey. Thank you for sharing Henry with us.

Donations to the Fanconi Anemia Research Fund

The family is planning to establish a foundation or fund to honor Henry and to share his life force with the world

So Dance with Henry, sing his song and go out in the world doing good, making people’s lives better and Henry will live through all of us.

lemonade stands
rocks
anything "rare"
his teachers
uno, skip bo & blink
chess
his portable dvd player
monkey bars
rainforest cafe
joseph and the amazing technicolor dreamcoat
sunglasses
"his" green chair
urinals
nana pat's mustang convertible
the beetle car
fishing with papa sy
making telephone calls
tae kwon do with anthony, vj & mr. kim
pee wee herman
lady and the tramp 2
the gap
his orioles wallet
the secret campground
sea kayaking with me

michael jordan
shooting baskets in the basement
t-ball
nikes
hot tubs
st. michaels
elaine
juan dixon
rootbeer and bubble gum "flavored" anesthesia
schoolhouse rock
eskimo and butterfly kisses

more of his favorite stuff:

beanie babies
bandaids
floating in hot baths with a lit candle and the lights off
soft pretzels
pringles
slurpees
m&m's (plain, not peanut)
orange sherbert
his new blue bathrobe
swords
writing his name
writing notes to Laurie and Bella

Laurie's Eulogy

On October 25, 1995, Henry made me a mom and a better person. Before he could even smile or talk, Henry taught me what was important and what just didn’t matter at all; and he taught me to savor each moment; to love; to laugh and to dwell in possibility.

And together as a family we have done just that, packing more smile and laugh-producing times together in seven years than many do in a lifetime. We have lived and loved as though we could one day lose Henry while simultaneously pushing love and science to their limit to ensure that we would have him in our lives forever. Henry has driven a tractor, fallen in love, danced with 10 women at one time, and laughed until he fell over. Just two days ago, Henry finally got the biggest, baddest Swiss Army knife which he held onto til the very end. We have lived every day with Henry to its fullest. We have had ice cream for dinner; transitioned from the hospital to running a lemonade stand in a matter of minutes; gone to Cactus Cantina seven nights a week; acquired every single Pokemon figure made. At last count we had 188. He met President Clinton, Cal Ripken, Batman, the entire Minnesota Twins, and more significantly, they got to meet him. We did all those things because at that moment in time we could and because, though we always hoped things would get better, we knew enough to go when the going was good. Just in case.

As I’m sure all of you know, Henry just made everything better. He was wise well beyond his years and he was so much fun. It’s almost as if all the good things in life were created with Henry in mind. No one had greater appreciation for Disneyworld, Funland, Sullivans or any of the other fun things in life than Henry. He was a great lover of music and could sing “Brick House” and dance with the best of them. I will cherish my memories of Allen and Henry dancing together in our home.

It is such a privilege to be Henry’s mother and am thankful every day that Allen and I found one another and created such a wonderful, love-filled family.

It’s no surprise that Henry has had an ongoing fascination with superheroes. He put on a Batman costume for Halloween when he was two and didn’t take it off until we left for Minnesota 2 ½ years later. Henry didn’t need it anymore since he had received sufficient training and at that point he had achieved superhero status in his own right. As my brother Andrew said, Batman should wear a Henry shirt.


My dad used to tell me that a day without me was a day without sunshine. Now I know what he was talking about. Sweetie, you are everything enjoyable in life. You are a lemonade stand on a hot summer day. You are the first piece in a box of Godiva chocolate; kite flying on the beach; the final encore at a Springsteen show; smores at a campfire; a piñata at a birthday party; fireworks on the 4th of July; a ride on a ferris wheel; the glow of candlelight during a thunder storm; finding a sand dollar on the beach; penny candy; class outside; the last ski run of the day; meeting your child for the first time. The loss of you drenches my heart in sorrow.

One nightfall, the evening before we left for Henry’s transplant, Henry and Jack were taken by the magic of fireflies and started to run around our yard, catching one after another. Each catch was a victory and was met with curiosity and excitement. Some of those bugs sacrificed their lives at the clumsy, but curious hands of these three and four-year-old boys.

I watched and let myself feel what it’s like to be a kid, filled with curiosity and wonder about the world. At some point I noticed that Henry had disappeared, so I went inside to see what had become of him. I went upstairs and slowly opened his bedroom door and heard a whisper telling me to come in quick and to shut the door. I found Henry lying on his back watching the fireflies, which he had brought upstairs one-by-one and set free, light up his room.

I’m not sure how Cactus Cantina or Max’s Ice Cream will survive without you and I sure wish that Daddy, Jack, Joe and I didn’t have to. I miss you so, so much already honey. Our job now is to ensure that everything is better because of you. So, like you, we will draw our swords, but don’t expect the same resiliency. You set the bar high. Give us a while and we will make you proud, my son.

So today we say farewell to your body and every day from now on we will cherish your soul and spirit for they live within us now. Goodbye Henry.

let's go get it over with

i just got dressed. i haven't worn a suit much in the past few years. i bought this knowing i'd need it for my mom's funeral. i took a look in the mirror and i look like a little boy in a man's suit. josh baskin at the end of big. henry would insist on wearing a sports jacket for his dates with his girlfriend bella.



i turn 40 next week. i have made the same exact wish for the past 7 years when i blew out the candles.

i need to keep updating the list of henry's favorite things, but now it is for me. he really like balls, and super balls, in particular. he loved baseball bats and had quite a collection of every size. he loved riding carousels and we rode them from martha's vineyard to central park to glen echo. and he was a connoisseur of things Digimon.

it is really smokey out today.

I don't know if anyone is still reading this but after the funeral I'll post the eulogy Laurie wrote. She is an amazing mother, a beautiful writer and the true love of Henry's life. My best friend Bill will read a letter that Henry's doctor, John Wagner, wrote that moves me to tears just thinking about. I think some other people might say something and I'll try to post whatever is appropriate.

Thanks for caring about Henry, Jack and Joe.

I've been fortunate over the past year to have emailed back and forth with Cindy Bullens, an incredibly talented (though woefully underappreciated) artist who lost her daughter, Jessie Bullens-Crewe, to Hodgkin's disease at age 11 in 1996. Cindy is kind enough to go around the country and play fundraising benefits for families like ours, in addition to her normal touring schedule. Cindy's album, Somewhere Between Heaven and Earth, does two important things (for me, that is) it captures a parent's grief and it rocks, or should I say, RAWKS!, dude. Her lyrics and music transcend the treacly pap I fear dominates a lot of the grief and mourning space. I would recommend her music to anyone (not just those mourning the loss of a child), particularly this album and her newest, Neverland, which features a stellar supporting cast of Steve Earle, Emmylou Harris and Benmont Tench. I think Cindy's music is going to help Laurie and me a lot. One of Laurie's favorite movies of all-time is Grease, and I think it bodes well that Cindy wrote and performed a lot of the music for the film's soundtrack.

I've got this cranked, very loud, right now. Thanks Cindy.

Better Than I've Ever Been
…(People say) that I'll never be the same
That's true-no doubt
But I know more now what life is about

I laugh louder
Cry harder
Take less time to make up my mind and I
Think smarter
Go slower
I know what I want
And what I don't
I'll be better than I've ever been
Maybe I'll be better than I've ever been…

There's a curious freedom
Rising up from the dark
Some kind of strength I've never had

Though I'd trade it in a second
To have you back
I gotta try to make some good out of the bad.

Henry Goldberg, 7; Illness Led to Controversy

Friday, December 13, 2002; Page B08

Henry Strongin Goldberg, 7, whose parents' fight to save him using pioneering embryo research raised ethical questions and brought his case to national prominence, died of Fanconi anemia Dec. 12 at a hospital in Minneapolis.

Henry, who lived in Washington, was a student at Jewish Primary Day School in Silver Spring when he wasn't convalescing at Georgetown University Hospital.

Doctors in 1995 determined that he had the rare disorder, which causes bone marrow failure. Working with geneticist Mark Hughes, who later resigned from Georgetown because of his research, Henry's parents, Allen Goldberg and Laurie Strongin, produced test tube embryos in the hopes of conceiving a child without the anemia. That child's marrow would be used in a transplant.

Henry needed the transplant before the sibling could be born, and the procedure was performed at the Minneapolis hospital with marrow from an unrelated donor. However, the child of another family that worked with Hughes did receive a transplant of marrow from a sibling conceived for that purpose.

Some ethicists and antiabortion figures denounced the process attempted in Henry's case, saying it amounted to "harvesting" children. Others, including Henry's parents, argued forcefully for its potential to save lives and alleviate pain.

Henry's case was featured in the New York Times, on ABC's "Nightline" and on a family Web site. A "Nightline" producer described Henry as "an energetic, funny, scrappy, resilient little boy."

He had been a member of the Dolphins of the Stoddert Soccer League in Washington and had gone to preschool at Adas Israel Congregation in Washington.

Other survivors include two brothers, Jack and Joe, both of Washington; and his grandparents, Seymour and Patricia Strongin of Washington and Theodore Goldberg of Rockville.

© 2002 The Washington Post Company

I must have been gone longer than I thought. I couldn't figure out which way to turn the knob in the shower to get hot water. Standing in the shower I remember how often Henry liked to get in our shower and just stand there for what seemed like hours. Sometimes when he wasn't feeling so great we'd put a little stool in there for him to sit on. But he just liked to be in there with the warmest water falling over his body until his skin was "pruney." He was also always game for a kiss on the glass. I'd put my lips up to the shower door from the outside and he'd press his lips on the other side of the glass and we'd smooch.

I didn't get a "death notice" in the paper in time. If anyone wants to make a donation in Henry's memory to the Fanconi Anemia Research Fund, their address is

Fanconi Anemia Research Fund, Inc.
1801 Willamette Street, Suite 200
Eugene, Oregon 97401
Telephone: 1-541-687-4658
Fax: 1-541-687-0548
E-mail: info@fanconi.org
http://www.fanconi.org

From: Nightline [mailto:listeditor@abcnews.go.com]
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
brother.

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 [mailto:listeditor@abcnews.go.com]
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
tissue.

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
Correspondent
Nightline Offices
Washington, D.C.