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Archive for August, 2010

Thursday, August 26, 2010

Why We Do What We Do

(Note: I got this note after yesterday’s Hope for Henry Superhero Party at Sinai Hospital in Baltimore.)

Dear Laurie and Julie,

On behalf of the pediatric patients and staff of Sinai Hospital, we would like to thank you again and again and again for the wonderful Hope for Henry Super Hero Party that you held today for the children. It was such an incredible success!  The patients ranged in age from 18 months to 20 years, and we can truly say that everyone had a great time. Not only did the patients enjoy it but so did the staff.  We think that it was because you are such wonderful people with whom to work.

Please keep up the great work.  What you are doing through the Hope for Henry Organization is truly making a difference in the lives of many children and their families. You really are bringing a lot of hope and joy into this world. You are truly our idea of what real super heroes are meant to be!

Sincerely,

Laura Cohen, CCLS

Kristen Mylotte, CCLS

Thursday, August 12, 2010

For Henry’s Sake: Pioneering the Genetic Frontier

This piece ran today in the Jewish Daily Forward.

By Laurie Strongin

Ten years ago, the first-ever bone-marrow transplant was performed using the umbilical cord blood of a baby deliberately selected and implanted through a combination of in-vitro fertilization and genetic testing to save the life of his older sibling.

The embryo-screening procedure known as pre-implantation genetic diagnosis, or PGD, had previously been used to enable parents who were carriers of deadly childhood diseases like Tay-Sachs to knowingly get pregnant with healthy babies. But the birth of Adam Nash in August 2000 marked the first time that the procedure was used to produce a disease-free baby who would also be a perfect bone-marrow donor. Adam saved his sister Molly’s life through the risk- and pain-free donation of stem cells from his umbilical cord, which would otherwise have been discarded as medical waste.

Reaction to the news of the first so-called “savior sibling” was swift and wide-ranging. Doctors, bioethicists and religious leaders, as well as families facing the premature death of their young children, voiced opinions ranging from enthusiastic support for this life-saving medical breakthrough, to concern over the potential for its abuse, to calls for it to be banned. Mine was among the voices of support. But it wasn’t the first time I had advocated for PGD.

My son Henry was born with a rare, inherited Jewish genetic disease, Fanconi anemia, which neither my husband, Allen Goldberg, nor I had ever heard of before. Among the first things we learned about FA was that it had the impossible-to-accept label “fatal.” The only hope for Henry was a bone-marrow transplant, which he was expected to need before he reached kindergarten. In 1995, when Henry was born and diagnosed with FA, transplant survival rates were dismal. In fact, no one with Henry’s type of FA — the type that occurs in the Ashkenazi Jewish community — had ever survived a transplant without a perfectly matched sibling donor.

Henry’s diagnosis was a shock. Like many Ashkenazi Jews, Allen and I underwent genetic testing prior to getting married to determine whether or not we were carriers of Tay-Sachs. We both tested negative. Since neither of us had any history of genetic disease in our families, we were unconcerned about passing along anything deadly to our children.

But that is exactly what we had done. We had unknowingly given FA to Henry at the same time we gave him brown hair, brown eyes and the absolute cutest dimples I had ever seen. Because Allen and I were both carriers, we had a 25% chance with each pregnancy that we would pass along the same death sentence. We wanted to have several children, but Fanconi anemia made family planning about a whole lot more than love and sex. All of a sudden, it was a complex puzzle of genes, statistical probability, prenatal testing and life-or-death decisions. It wasn’t just about creating life, but about avoiding certain death.

We refused to accept Henry’s fate without a fight. From the moment of diagnosis, we searched tirelessly for someone in the medical world who would help us save Henry. In the spring of 1996, our efforts paid off. We learned of a brand-new, untested medical procedure that could guarantee at the moment of pregnancy that our baby would be free of FA and also be a perfect genetic match to Henry and therefore his life-saver.

At that time, I was in my first trimester of pregnancy, with eight weeks to go before a prenatal test could tell us whether or not the child I was carrying had FA. PGD was the lifeline out of this horror. Next time, PGD would replace luck — which was what I was counting on for my current pregnancy — with certainty.

We got lucky. Our second son, Jack, now 13, was born healthy, which felt like a miracle despite the battery of tests that told us it would be so. Immediately following Jack’s birth in December 1996, we set out to conceive again, but this time using PGD in the hope that we could have another healthy baby who would also be Henry’s savior.

Allen and I entered completely uncharted territory. As the first people in the world to use this technology for this purpose, there was no precedent, there were no books or articles to read and no support groups. There were no established ethical guidelines or government or industry regulation of PGD. There were no guarantees except that the unknown held possibilities that otherwise eluded us. We were comforted by the consistency between our pursuit of PGD and the core Jewish value of pikuach nefesh, that every effort must be made to save a life.

We attempted PGD nine times over a period of three years, during which time we were caught in the crossfire of the national stem-cell debate and suffered from politically motivated delays that may have cost Henry his life. A mix of technological challenges typical of life on the medical frontier, statistical improbability (each embryo had merely an 18% chance of being both FA-free and a perfect match to Henry) and bad luck doomed us to failure. By the spring of 2000, we ran out of time. Henry’s health was deteriorating, and he needed an immediate transplant. Henry’s transplant occurred at the same time and same hospital as Molly Nash’s. Henry’s was from an unrelated donor, Molly’s from her perfectly matched brother Adam. Molly’s went smoothly, as expected. Henry’s was rife with complications. Ultimately, his body rejected it. In December 2002, Henry died at the age of 7.

So much has changed in the decade since we first tried to conceive using PGD. Carrier screening has expanded well beyond Tay-Sachs to include Fanconi anemia, Gaucher, Canavan and more than a dozen other diseases that disproportionately affect people of Ashkenazi Jewish heritage. Meanwhile, fears that PGD would lead to a widespread era of sex selection, or that the children conceived in part to help a sibling would feel unloved or exploited, or that PGD would offer a slippery slope to a world of eugenics have proven unfounded. In fact, the technology has improved, and it has already saved hundreds of lives.

I regularly get letters and e-mails from parents with children suffering from Fanconi anemia, Diamond Blackfan anemia and other life-threatening illnesses who conceived babies who saved their siblings’ lives. The purpose of the correspondence is always the same, to thank us, and especially Henry, for being pioneers.

Widespread access to carrier testing now enables couples to make informed family-planning decisions, and PGD can help ensure that parents do not produce babies born to die. Knowing firsthand about the many beneficiaries of these astonishing advances in medicine that have occurred over a relatively short period of time, I can only imagine what the future holds.

Laurie Strongin is the author of “Saving Henry: A Mother’s Journey” (Hyperion). She is executive director of the Hope for Henry Foundation, which improves the lives of seriously ill children by providing carefully chosen gifts and specially designed programs to entertain and promote comfort, care and recovery. She lives in Washington with her husband and two sons.

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Tuesday, August 10, 2010

Rehoboth Beach, The Ongoing Saga

(Note: For context, please read the blog post from August 1 and August 4, 2010 first.)

On March 2, 2010, my book hit the shelves in bookstores around the country. Friends in a variety of cities did what friends do. They took, and emailed me, photos of my book in DC, Maryland, Virginia, New York, Chicago, Los Angeles. You get the picture. That night, I had a beautiful book launch event at the Motion Picture Association of America in my hometown of Washington, DC. Within days, I had the incredible good fortune to appear on Good Morning America with George Stephanopoulos. Within days of that, The Washington Post ran a two-page spread on Saving Henry in its “Style” section. I was on The Bob Edwards Show, The Diane Rehm Show, USA Today, and many more outlets. My book was selling. I was busy. My high hopes and perhaps higher expectations were being met. I forgot all about the message I did or didn’t get on February 28 when I dared ask Browseabout Books if they had ordered a shipment of my book. Until…

On Sunday, March 21, at 16:26:31 EST, I got an incoming email from my sister Abby. I happened to be at a rest stop on 95 South, on my way home from a special book party that had taken place earlier that day at the home of my friend Lisa Belkin. I opened the email as my sister had noted that it was important. Not urgent, but important nonetheless. The email was short and to the point, “this is a photo of laurie’s book front and center at browseabout books in rehoboth!!! Attached to the email was a photo of Saving Henry, front and center at Browseabout Books. There was a red piece of paper taped above the book which read, “A story of hope and love. Part of this story takes place in Rehoboth Beach.”

My husband Allen responded to the email, not by immediately writing back to Abby, but rather by picking up the phone and calling Browseabout to see if they would be willing to invite me for a book signing later in the summer. Which brings me to Saturday, June 19, also known as later in the summer.

Wednesday, August 4, 2010

Rehoboth Beach, Continued, But Far From Over

(Note: For context, please read the blog post from August 1, 2010 first.)

I paid for Jack’s and my books at Browseabout. We headed toward the door. I hesitated. I turned around and walked back to the register. I feigned interest in the HEXBUG, a cool, new toy bug that crawls all over the place. I actually got interested in the HEXBUG. The book seller asked me if I’d ever seen them before. I told her I hadn’t. I started to turn away to leave but before I committed to walking toward the door, I turned toward her and asked if they were expecting copies of Saving Henry. The book seller checked her computer. I held my breath. She clicked buttons. I continued to hold my breath. She nodded. I took a breath because I had to. She explained, “I don’t see that we have any coming in, but I’m happy to order one for you.” “That’s OK,” I replied as I slowly walked toward the door in search of Jack, whose beautiful smile was sure to wipe away my disappointment in a flash. The Candy Kitchen red licorice bites I had purchased for my dining pleasure on the road trip home didn’t hurt either.

Monday, August 2, 2010

Rehoboth Beach, The First of Many Musings

Sunday, February 28 was pub date minus two days. I had a hankering for a veggie Nic-o-boli. Jack did too. Plus he needed to add a Grateful Dead t-shirt featuring the cover of American Beauty to his growing collection of awesome rock t’s (that is, if you think Jimi Hendrix, ACDC and Bob Marley are awesome, especially considering that most of Jack’s contemporaries like Taylor Swift and the Jonas Brothers).

It was cloudy and in the 40s. It was winter. We did what we had to do. We headed to Rehoboth Beach, DE, home of the Nic-o-boli, Candy Kitchen, Funland and so many other awesome items that comprise Henry’s list of favorite things.

In addition to so many of summer’s most excellent delicacies, Rehoboth Beach also is home to a great independent bookstore, Browseabout Books. Avid readers all, our family benefits from Browseabout’s frequent book buyer program, earning one free for every 13 purchased. We get a few free books each summer.

We made great time and arrived in Rehoboth two hours and twenty-three minutes after we set out on our journey. Just in time for lunch. Thrashers French fries were our appetizer of choice, followed by vegetarian Nic-o-bolis for the main course. If you know me or have read Saving Henry, you know that we had Candy Kitchen for dessert. Red licorice bites and dark chocolate nonpareils (think big sno caps) for me. Various exotic chocolates for Jack. A pound of chocolate fudge to go for Joe. For those who offered to host book parties in March and April, Jack and I picked out seven different types of candy (sour gummy worms, candy buttons, salt water taffy, nonpareils, wax bottles, red shoestring licorice, gummy bears) which we planned to put in the 12 empty, colorful Candy Kitchen sand pails that I convinced them to sell to me for $1 apiece.

It was windy and cold and the boardwalk was under repair so walking on the beach didn’t have much appeal. We decided to go to Browseabout and then head home. Jack bought “On the Road.” I bought “Sarah’s Key,” a book that my editor at Hyperion had recommended at lunch several months earlier.

As I waited to pay at the register, I wondered if my book, Saving Henry, would be on the shelves two days later. If it was, I was certain that it meant that my book would be a success. If not, well then, it was over before it started. The stakes were big. The stakes were invented. I wavered. I decided. I would not ask. If the book seller said it was on its way, it would make me feel so good. If she said it wasn’t, it would cast a dark(ish) shadow on a wonderful day and be a book release momentum killer.

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