• April 2010

What Laurie Strongin Learned From "Saving Henry"

By Hope Katz Gibbs
Editor and Publisher
Be Inkandescent magazine

“How do you make beauty and meaning out of unimaginable sorrow?” writes Rabbi David Wolpe on the back jacket of Laurie Strongin’s 2010 book, “Saving Henry.” Wolpe notes: “This is a stirring account of struggle, love, and loss that manages to be both honest and inspiring.”

Indeed. This beautiful and emotional account of losing Henry at age 7 to the rare genetic disorder Fanconi anemia is a gut-wrenching tale — and every parent’s nightmare.

And yet, one walks away from the account feeling incredibly inspired and uplifted. With chapters entitled, “True Love,” “The Wonder Years,” and “Funland,” it’s hard not to fall in love not just with Henry, the adorable star of the story, but with everyone who tried to save his life.

Henry’s Favorite Things

As we read about “Henry’s Favorite Things” — catching fireflies, wearing candy necklaces, M&Ms (plain, not peanut), and his girlfriend Bella — and the way he made the best of an often scary, frustrating, and painful situation, we begin to realize that the important thing is to embrace the joy of life, no matter how short.

“In the end, living life to the fullest is what really matters,” says Laurie over a cup of hot coffee at the Starbucks near her DC home. “That’s what I want people to realize, that you have to embrace the good stuff while it is happening. If you don’t, what’s the point?”

True Love

“On October 25, 1995, Henry Strongin Goldberg was born,” writes Laurie on the website for the book, savinghenry.com. “Two weeks later, he was diagnosed with Fanconi anemia, a disease that threatened to take his life, and challenged us to live well despite it.”

It is with that unbreakable positive attitude that Laurie and her husband Allen Goldberg fought to save Henry. The battle was more than challenging. Laurie and Allen learned within weeks of Henry’s birth that the disease would eventually cause their beautiful baby son to suffer bone marrow failure and possibly die.

Their best hope was to conceive another child who could provide a bone marrow transplant. They knew the odds were not good. Their next child had a 25% chance of being affected with the same disease and only an 18% chance of being healthy and a transplant match for Henry.

A brother to the rescue

Sometimes called a “savior sibling,” the concept and topic was incredibly controversial in 1995 and the subsequent years. Nonetheless, Laurie and Allen were game to try.

“I’ve always been of the mind-set that we need to have a conversation about this -— that government and bioethicists and parents and doctors need to actually be talking about what is acceptable and what is not,” Laurie told Washington Post reporter Liza Mundy in an article that ran on the front page of the Style section on March 25. Read that here: www.washingtonpost.com.

They did have another baby, a healthy boy named Jack, in December 1996 (pictured above with Henry). And while he grew up to be Henry’s best friend, he did not provide a transplant match.

Henry went on to have a transplant through another donor, which was identified by the National Marrow Donor Program. That kept him going.

Eighteen months after Henry’s transplant, another baby, Joe Strongin Goldberg, was born. “We were not in need of a sibling match any more,” Laurie says. “That time was behind us. We simply wanted a healthy baby. Joe was healthy, which was what was important.”

In the late fall of 2002, however, Henry’s health began failing. In the last year there had been many setbacks and long stays in the hospital, but in November Laurie knew something was terribly wrong.

Her instincts were right. Although he’d bounced back many times before, Henry’s body was finally giving out. He died on Dec. 11, 2002.

Live well, laugh hard

The details of Laurie’s painful journey are beautifully detailed in her book and in articles that have run in nearly every major publication and news show in the last few months — including The Atlantic, The Globe and Mail, and Good Morning America.

On the website for the book, we find valuable lessons that we can incorporate into our lives starting today.

“Henry embraced each opportunity for living completely and reminded the rest of us to do so,” Laurie writes. “His sparkly eyes, mischievous grin and infectious smile were a call to action to smile back, laugh along and dance with him. His ear-to-ear smile and joyous laughter were far more noticeable than his many surgical scars and low-platelet related bruises. He suffered plenty of setbacks and spent more nights in the hospital fighting against whatever Fanconi anemia would throw his way, but just when it looked like the disease was too tough of an opponent, Henry would rise up and get back to the life he chose to lead. He had ice cream for dinner and transitioned from the hospital to running a lemonade stand in a matter of minutes.”

“While we struggle to cope with Henry’s premature death, he is alive and well in our hearts and minds, and every day we strive to be true to the lessons he taught us about the importance of family, friends, love, courage and laughter.”

Hope for Henry

From the depths of despair, Laurie, Allen, Jack and Joe have found strength — and are continuing Henry’s life-embracing legacy.

“To honor his life and share his magical way of making each day matter, we founded the Hope for Henry Foundation, www.hopeforhenry.org,” Laurie shares. “Recognizing the restorative effect of laughter and learning, smiles and hope, to quality of life and determination to get better for Henry and thousands of children like him, Hope for Henry fills their recovery time with fun and entertainment.”

The organization currently works with a handful of hospitals in Washington, DC, Baltimore and Philadelphia, including Georgetown University and Children’s National Medical Center in Washington, DC; Sinai Hospital of Baltimore; and two Ronald McDonald Houses in Philadelphia that serve patients at Children’s Hospital of Philadelphia and St. Christopher’s Children’s Hospital.

For about $50,000 per year, depending on the number of patients served, the organization hosts birthday and other fun parties and provides DVD players, iPods and other electronic diversions for critically ill children.

“Hope for Henry is there at the moment of diagnosis,” Laurie explains. “While parents are reeling with the news that their child has cancer and filling out all the required paperwork, their child is busily filling out a Hope for Henry intake form, which simply asks: What might make you happy? An iPod, a DVD player, a digital camera, or a portable game player? Within minutes of making their selection, a child life worker gives the child their new gift and they can spend the afternoon watching movies or listening to music. This gift reduces the fears associated with being in the hospital and fills downtime with smiles and laughter.”

To date, the foundation has given more than 900 seriously ill children brand-new, high-end portable electronics. They have also hosted Superhero Celebrations, Summer Carnivals, Harry Potter Book Parties and Halloween Parties for more than 4,000 children.

How you can help

Donate online: More than 3,500 individuals have donated nearly $750,000 to the Hope for Henry Foundation since 2003. These tax-deductible donations allow the Foundation to reach out to children and families spending far too much time in hospitals and enhance their lives through carefully chosen gifts that bring comfort and entertainment. Through these gifts, HFHF brings smiles and laughter, hope and magic into the lives of these children and families who need it most.

The average cost of a Hope for Henry gift is $250. Sponsoring a gift for a child is a terrific way to participate. At another level of participation, each hospital that the Foundation services costs an average of $50,000 a year.

Click here to donate through the Network for Good. You will receive an email receipt of your donation from Network for Good for tax purposes. Please click on the Network for Good logo just above to make your online donation.

Donate gifts to celebrate an occasion: If you are celebrating a birthday, communion, a christening, bar or bat mitzvah, anniversary, graduation, marriage, birth, or other gift-worthy event, consider asking that donations be made to the Hope for Henry Foundation in honor of the reason for the event.

Matching Gifts Programs: Many employers will match the charitable gift of an employee. This is an excellent way to double your donation.

Hope for Henry Fundraising Partner: Organize a fundraiser for Hope for Henry in your community.

Corporate Holiday Gifts: In lieu of sending corporate holiday gift baskets, consider making a donation to Hope for Henry Foundation in honor of your employees, customers and clients.

Contributions by check should be sent to:

Hope for Henry Foundation
PO Box 39133
Washington, DC 20016
Checks should be made payable to: Hope for Henry Foundation.

Hope for Henry Foundation is a 501 ©(3) tax-exempt organization designated by the Internal Revenue Code. Our tax identification number is 20-0244173.

All contributions are tax deductible. For more information, email info@hopeforhenry.org or write to Hope for Henry Foundation, P.O. Box 39133, Washington, D.C. 20016.

About Laurie Strongin

Laurie Strongin is the founder and executive director of Hope for Henry Foundation, which brings entertainment, laughter and smiles to seriously ill children. She also acts as a family advocate in the national discussion of ethics and genetics.

She has participated as a panelist and guest lecturer in forums hosted by the Johns Hopkins Genetics and Public Policy Center. In 2006, Laurie joined Congresswoman Nancy Pelosi to urge Congress to pass the Stem Cell Research Enhancement Act. She is a regular panelist on Clear Channel’s Sunday radio program, “Women Talk.”

Laurie lives with her husband Allen Goldberg and sons Jack and Joe Goldberg in Washington, DC.

Become a Fan on Facebook of Saving Henry – A Mother’s Journey by Laurie Strongin.