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Banking on a lifesaver
Henry Strongin, 5, and Dan Brown, 32, fight for their lives
against genetic disorders

Washington Jewish Week
September 12, 2000

Henry Goldberg playing in his hospital room.
WASHINGTON—Four-and-a-half year old Henry Strongin Goldberg wears light-tan corduroy pants with a navy-blue sweatshirt adorned with his favorite super-hero characters-Superman, Spiderman, and Batman, among others. As this playful little boy with deep brown eyes and brown hair frolics with his younger brother, Jack, both are unaware of the Herculean efforts needed to save Henry's life.

Henry, son of Laurie Strongin and Allen Goldberg, suffers from a rare, genetic disease called Fanconi anemia that leads to bone marrow failure, aplastic anemia, and ultimately, leukemia.

Nearby in Bethesda, Md., another Jewish family struggles with a similar life-and-death drama. Daniel Brown, a 32-year-old father of two young children and husband to Jolie Grossinger Brown, learned in February that he suffers from chronic myeloid leukemia.

For long-term survival, both Henry Goldberg and Dan Brown needed to find matches for bone marrow transplants. Extensive donor searches were conducted in local synagogues. Their families joined the 3,000 patients searching the National Marrow Donor Program registry.

The bone marrow donor drive involves a simple blood test; volunteers must be in good health and between age 18 and 60. A donor need not match the recipient's blood type. Instead, a "perfect match" is the match up of all 6 proteins in the blood.

In an area where people sometimes feel they have better chances at winning the lottery, both Henry and Dan did just that. Matches were found for both.

Henry's story

Laurie Strongin remembers waiting in line to be tested in the early 1990s, hoping to be the one chosen to save Allison Atlas, the personable young Jewish woman suffering from leukemia. Strongin never imagined that one day, nearly a decade later, she would be searching for a bone marrow donor for her own child.

For the most part, Strongin's pregnancy progressed normally until the 36th week, when the baby's growth was determined to be four weeks behind, and he was delivered by scheduled Caesarian section.

At birth, Henry appeared relatively normal, but the appearance of a slight bud of an extra thumb alerted physicians to potential genetic problems. Henry was also found to have a serious heart defect called tetralogy of Fallot, characterized, in part, by an opening in the wall that separates the two sides of the heart. "We were completely horrified and terrified," recalls Strongin. "We were completely unprepared for this." The heart condition was surgically corrected when Henry was six months old.

But these conditions were indicators of a far more serious malady: At two weeks old, Henry was diagnosed with Fanconi anemia (FA), a rare genetic disease.

Although non-Jews can have FA, one out of 87 Ashkenazi Jews is a carrier of the variety of FA affecting Henry.

Four years ago, Henry's only hope for improvement was from a bone marrow transplant from a related donor. The Strongin Goldbergs decided to have a second child "right away" with this hope in mind, although they learned through genetic testing at 12 weeks into the pregnancy that Jack, now 3 ½ years old, would not be a match-but also that Jack would not have FA. Today the boys are best buddies, romping around and seemingly climbing all over each other.

"Every day we live life to the fullest. That's what we learned to do from the day he was born," Strongin said as her son waited for a match. "But I have sleepless nights, and so does Allen, every single night..."

Over the last four years, the family has helped raised over $200,000 to benefit research into Fanconi anemia. Recent advances in protocols for bone marrow transplantation have improved success rates with marrow from unrelated donors.

Every week Henry went to the hospital for a complete blood count; and once every six months he underwent a bone marrow aspiration (by needle) to check for abnormal cells in his marrow.

In April, Henry's blood results were poor, and his father, Allen Goldberg, said Henry's condition was "coming to a head." Henry was at immediate risk of developing leukemia and needed a marrow transplant by this summer to have a chance of living.

"The one thing we have dreaded…is coming around the corner," said Allen Goldberg. "This is weighing much more heavily on our everyday life, and it is a lot more difficult to smile and clown around because we know there may be a time limit on how much time we have left."

Strongin also kept the faith. "I'm so glad I had him. There's not a second of our lives" when she feels otherwise. "I love him so much. Every day is a blessing. We've learned to savor every moment."

Before a donor was found for Henry, his mother Laurie Strongin, was willing to keep up the search even while it meant likely finding a match for someone else. "We want to help find donors for other people. It's the right thing to do," she said.

But a match was found. Henry had a transplant on July 6. His mother says he's doing great. His activities are restricted, and he can't yet be exposed to people outside his doctors and his own family

The new bone marrow is producing red and white cells and platelets, so the need for blood transfusions has decreased. A bone marrow biopsy and aspiration will soon reveal whether the bone marrow is rich in donor cells.

Things are looking up for the Strongin-Goldberg family. With God's help, they'll stay that way.

"This has been a difficult journey, made easier through the support of our wonderful family, friends and the larger community," says Strongin.

Dan Brown's story

Daniel Brown is a handsome, young Jewish man, building up his 3-year-old law firm, Brown and Gould in Bethesda, Md., and doting on his toddler children Jordana, 3, and Dustin, 1. Dan's wife, Jolie, is co-owner of a pet services business called "A Walk in the Park."

Last fall, Dan "came down with a virus and had a cough, just like everybody else. I didn't think much of it. When it got to be December, I started thinking, 'What's going on?' But I felt [reasonably] okay."

By late January, Brown developed severe shortness of breath, evident when just walking up a flight of stairs. He had night sweats. "I knew there was something wrong with me," Brown recalls.

Over a month of visits to heart specialists and pulmonologists, his condition went undiagnosed until Dan felt a large mass on the left side of his abdomen. That turned out to be an enlarged spleen, swollen to about 7 to 8 pounds.

At this point, a physician realized that in focusing on possible respiratory problems, no one had thought to test Dan Brown's blood.

Brown had blood drawn and went to work. "Forty-five minutes later, I got a call at the office from the doctor," Dan recalls. "I thought, 'That's odd. Why is he calling me?'" The doctor's tone was urgent: "'You're going to need to see a hematologist...,'" Dan was told. He pressed for more information over the phone: "'I think you may have some kind of leukemia,'" Dan says the physician told him. "And at that point, I was devastated."

"Surreal" was the single most accurate description for how Dan Brown felt about his diagnosis and the process of searching for a bone marrow donor. "This can't be happening to us...," he thought as his mind reeled with the initial diagnosis that was confirmed on Feb. 16 with a bone marrow biopsy.

Dan entered chemotherapy , which masked the disease.

"I go to my office and work, and I play with my kids. I'm doing some light exercise, and now it's really surreal in a specific sense because I feel somewhat normal, yet lurking within my genes is this defect," he said.

But things are looking up for Dan now. He has secured a bone marrow match, and is currently starting a drug trial of STI-571, which is designed to eradicate CML and has shown early promising results, according to Jolie. The drug, taken as a pill, may render the transplant unnecessary. If the drug is unsuccessful-it will take six months to determine its effectiveness-then Dan and Jolie will head to the Fred Hutchinson Cancer Center in Seattle for a transplant.

Brown's type of leukemia is not hereditary but involves a mutation of the genes, Brown explains. Researchers believe that patients like Daniel Brown are born with a normal set of chromosomes, but that somewhere, sometime during life, the patient encounters a toxin or virus that causes a life-threatening mutation. In the U.S., roughly 5,000 people, or one in 60,000, is affected with chronic myeloid leukemia.

Brown is focused on maintaining a healthy diet, fitness and a positive attitude.

"Your life goes so out of control so quickly [with this diagnosis] that you desperately want to have certain elements that are under your control," says Brown. "It makes you think a lot about things of a spiritual nature...You can wind up expending a lot of negative energy on the question of 'Why me?' Or, 'How did this happen?' Or, 'What chemical or toxin did I encounter?'...and it will get me nowhere," says Brown. "So we've focused 100 percent positive energy to ensuring that I'm prepared for the transplant...You shift into a survival mode. We have no other option but to beat this thing."

To find out more about the national bone marrow registry, visit the National Marrow Donor Program. To monitor the progress of Henry Goldberg and Daniel Brown, visit Hope for Henry and Tomorrow for Daniel.

© Washington Jewish Week, 2000. May not be reproduced without written permission.

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