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Regarding Henry
Mother chronicles her son’s medical plight in new book.

January 15, 2010

Jenny Glick
Special to the Jewish Times

Laurie Strongin was just like any other excited new mom as she prepared for the birth of her first child. On Oct. 25, 1995, 5-pound Henry came into the world a little early and with a hearty cry. The doctors told Ms. Strongin, “It’s a boy!” With the video camera running, congratulations started going around.

But within the first few minutes of the child’s life, the normal scenario ended. The video camera was shut off.

The way Ms. Strongin tells it, Henry Strongin Goldberg was whisked away by doctors. She would have to wait an excruciating 16 hours before she could hold her son.

Ms. Strongin and her husband, Allen Goldberg, would learn that Henry had a congenital heart defect called Tetralogy of Fallot. Surgeons would reassure them that they could fix the problem. In the meantime, their baby would be tested for an extremely rare genetic disorder. The genetic disorder was Fanconi Anemia — and Henry had it.

In her soon-to-be-released book “Saving Henry: A Mother’s Journey” (Hyperion), Ms. Strongin, who lives in Washington, D.C., shares her son’s life and her own painful journey. She writes of how she had never heard of Fanconi Anemia before Henry’s diagnosis.

But she and Mr. Goldberg — both Jews of Ashkenazic descent — would soon learn it is a rare genetic disease they unknowingly passed onto their first-born child.

It would turn out Henry’s heart problems would be the least of his health problems. Having Fanconi Anemia meant Henry would eventually suffer bone marrow failure. Ms. Strongin was told Henry would probably experience bone marrow failure by age 5. Without a sibling marrow match, Henry’s odds of survival would be slim.

“Here we are, holding this beautiful child [and] we know he has a serious disorder,” she said. “It was very daunting to consider. We knew we had a few years to figure out what to do.”

Ms. Strongin said Henry underwent a successful heart surgery at around 6 months old, and he recovered beautifully. To everyone at that time, he seemed like any other healthy baby.

“At a year, Henry was babbling and crawling and trying to take his first step,” she said.

But the family knew the clock was ticking. Ms. Strongin got pregnant with their second child after Henry’s heart surgery. At the back of her mind, she said she couldn’t help hoping that her new son, Jack, would have the life-saving bone marrow that Henry needed.

Jack would not be a match, but the family was thrilled he didn’t have Fanconi Anemia.

After Jack’s birth, Ms. Strongin and Mr. Goldberg embarked on a controversial path to save Henry’s life. It was called pre-implantation genetic diagnosis (PGD).

She writes in her book, “PGD would enable us to identify and implant an artificially conceived embryo that was not only healthy but who also could be Henry’s savior. By collecting this healthy baby’s umbilical cord blood and transplanting the stem cells to Henry, our baby could cure Henry’s blood disease.”

Close Calls

Doctors told Ms. Strongin and Mr. Goldberg that if Henry had a sibling donor match, his odds of survival would skyrocket, from 20 to 90 percent.

“It was a combination of the most hopeful I had ever been,” she said. “There was a part of me that believed we would have our three kids … and Henry would live.”

To save Henry, Ms. Strongin went through nine attempts at in vitro fertilization. All nine failed.

When Henry was 4 1/2, true to doctors’ predictions, his bone marrow was failing. There was no more time to try another IVF match. They took a match off the donor registry.

The next 2 1/2 years would be filled with close calls.

In the middle of the worst of times, Ms. Strongin and Mr. Goldberg tried to surround Henry with his favorite things. His little brother was always at the very top of the list.

“Jack was the best emotional therapy,” she said. “There were not a lot of resources at any of the hospitals to tend to their spirits.”

Batman, Cal Ripken Jr., monkey bars, spring training, flushing his own IV lines and chocolate chip pancakes were also on one of several lists Ms. Strongin made of Henry’s favorite things. During those long, hard days in the hospital, she said they also invested in a portable DVD player and game systems to keep Henry’s mind off the painful procedures.

And Henry cheated death, again and again.

“He lived for another 2 1/2 years,” Ms. Strongin said. “The illness was relentless against his body, but it didn’t have a prayer against his spirit.”

Henry’s fight came to an end in December 2002 when he was 7. He died from complications of his stem cell transplant. Ms. Strongin said Henry’s donor’s marrow systematically attacked his body — his stomach, skin and liver. For the last 2 1/2 years of his life, Henry’s longest stretch at school was three weeks.

At his funeral, Ms. Strongin’s brother read her eulogy:

“You are the first piece in a box of Godiva chocolate; kite flying on a beach; the final encore at a Springsteen show; s’mores at a campfire; a piñata at a birthday party; fireworks on the Fourth of July; a ride on a Ferris wheel; a glow of candlelight during a thunderstorm; 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.”

And after years of fighting for his life, Ms. Strongin said she and Mr. Goldberg made a commitment to honor Henry’s life on the day of his passing.

“Our job now is to make sure everything is better because of you,” she writes. “So like you we will draw our swords. … Give us a while and we will make you proud my son.”

Soon after his death, Ms. Strongin and Mr. Goldberg founded the Hope for Henry Foundation. Its slogan is “Live well and laugh hard.”

“On what would have been his eighth birthday, we talked about how to honor his legacy and spirit that would improve the day-to-day lives of sick children,” she said.

Hope for Henry initially partnered with Georgetown Hospital and University of Minnesota Children’s Hospital, but more recently the desire to serve more local children had Ms. Strongin looking for a Baltimore hospital to partner with.

The connection was made when she met Julie Bender, a former social worker at Sinai Hospital, through Congregation Adas Israel in Washington. Ms. Bender has worked closely with Sinai’s pediatric hematology oncology unit. She started calling her contacts and helped raise thousands of dollars so the Hope for Henry program could come to Sinai.

Now, on any given day at Sinai Hospital, when a very sick child celebrates a birthday, Hope for Henry sweeps in to transform it into a magical day of fun. Girls and boys get a party box filled with themed plates, hats, cups and party favors. There are scores of age-related themes to choose from, ranging from Hello Kitty to Hannah Montana to Batman. From birthday banners, to centerpieces, to party favors, the foundation has thought of just about everything to transform a hospital room into a party room fit for a young pirate or princess.

“Our goal is to go over the top, so it’s an extravaganza,” Ms. Bender said. “So basically the day of the party, we decorate the whole room with Mylar balloons and they get a personalized cake and get to pick out a birthday gift.”

In addition to the Herman & Walter Samuelson Children’s Hospital at Sinai, Hope for Henry offers the birthday program at Georgetown Hospital, Children’s National Medical Center, and at two Ronald McDonald houses in Philadelphia.

Hope for Henry doesn’t just celebrate birthdays. It also holds superhero parties, Halloween parties and summer carnivals for sick children at partnering hospitals.

Henry’s youngest brother, Joe, was only 1 when Henry died. “I work hard to balance being the proud and thankful mother of two beautiful, thriving, wonderful boys, with the agony of living without Henry,” writes Ms. Strongin.

Bringing joy to sick children, through the Hope for Henry Foundation, she said, helps.