Helping People

A simple cheek swab may save a person’s life

Jay Feinberg, chief executive of Gift of Life Marrow Registry in Boca Raton, had battled cancer earlier in his life, which led him to found Gift of Life.
Jay Feinberg, chief executive of Gift of Life Marrow Registry in Boca Raton, had battled cancer earlier in his life, which led him to found Gift of Life.

When Robby Holroyd learned he was going to spend six hours tethered to a machine that would drain the blood out of one arm, process it, then return it to his body through the other arm, he was thrilled.

“I felt like I won the lottery,” said the 24-year-old from Coral Springs.

While attending a college dance marathon in 2011, Holroyd had his cheek swabbed at a booth run by Gift of Life — a non-profit, Boca Raton-based international bone marrow and blood stem cell registry dedicated to giving every person battling blood cancer a second chance at life.

“Cancer runs through my family, and to be in a position that I could help somebody else out — it was a no-brainer,” he said.

That swab, which collects DNA from inside a person’s cheek, led to Holroyd being matched to a woman with leukemia needing a stem cell transplant. Earlier this year, he underwent the procedure that extracted his bone marrow, a rich source of stem cells to fight blood cancers such as leukemia or multiple myeloma.

Co-founded by Jay Feinberg, who found himself in need of a donor 25 years ago, Gift of Life has facilitated more than 3,000 transplants since its inception in 1991. It has added 275,000 names to Bone Marrow Donors Worldwide, a database of 28 million donors.

“A lot of people think that somebody else will do it,” Feinberg says, aware of how close he came to death when he was diagnosed with leukemia. “People need to remember that it only takes one person to save a life.”

Holroyd says that being a donor is one of the most gratifying — and easiest — things he has ever done. (The procedure, which involves a machine draining blood from your arm, has much become much easier over the years.)

“Initially, I was a little bit nervous, but they really walked me thought it, and everything happened exactly how they said it would . . . There was no pain whatsoever.”

About one quarter of those diagnosed with blood cancers, genetic diseases and immunodeficiency disorders are candidates for bone marrow or stem cell transplants, said Dr. Hugo Fernandez of the Department of Blood and Marrow Transplant at Moffitt Cancer Center in Tampa. Of those, Fernandez says about 6,500 become transplant recipients. (Some die while waiting to get a transplant.)

One of the lucky recipients was Irving Silverstein, who said a lingering cold he had in 2012 developed into weeks of coughing. He became so weak he could not get up from his chair to take a shower. A blood test revealed he had a bone marrow disorder called myelodysplastic syndrome.

Silverstein, now 70 and living in Lake Worth, says he underwent eight grueling months of chemotherapy and blood transfusions.

“It was a nightmare,” he says. “They ran out of spots to inject me. I was getting terrible side effects . . . I turned to my wife and said, ‘If I gotta go on like this, I gotta pack it in.’”

Silverstein’s wife, Ellen, encouraged him to seek another opinion. The new doctor recommended a stem cell transplant. A few months later a perfect match was located — a man in Poland, who traveled to Germany to donate the stem cells that would save Silverstein’s life. The procedure was not as bad as Silverstein had feared.

“Here I am thinking this is going to be some big fancy thing . . . The next thing you know they walk in with a bag. It looked like a plasma bag. That’s all it was.”

While Silverstein was fortunate to find a match, Fernandez notes that blacks, Hispanics and Native Americans have more difficulty locating donors.

“The human population is very genetically diverse,” says Fernandez. “The more donors you have in the registry, the better chance you have of matching someone up with a donor that is unrelated.”

In 1991, the year Feinberg was accepted into law school, he and his parents, Arlene and Jack, learned he had leukemia. He was 22.

“They suggested that I continue on the chemo for as long as it would work, and when it didn’t work anymore, there were lots of medications they could give me to keep me comfortable,’’ he said. He was told “to prepare my bucket list and do the things that I wanted to do in life while I had the time.”

Doctors told the Feinbergs that a bone marrow transplant was their son’s best chance for survival, but the limited donor database offered little hope of finding a match.

So they huddled around the kitchen table and concocted a plan. If a donor would not come to them, they would find a donor. The Feinbergs spent four years holding worldwide donor drives, searching frantically for a match.

Despite finding matches for other patients and laying the groundwork for Gift of Life, Feinberg couldn’t secure a match for himself and his time was running out. He and his family decided to settle on a partial match donor — a donor who was a less-than-perfect genetic match — which meant the risk of failure was higher.

Just before the procedure, the family held one final donor drive. At the last minute, Becky Keller volunteered to attend in place of her sister, who had decided to stay home to study for an exam.

Frightened by the needles that were used in the early days of testing, Keller, 18, agreed to get tested just before the booth closed.

And in that magical moment, Jay Feinberg got his life back.

Today, Feinberg, 48, lives in Delray Beach and runs Gift of Life, motivated by the second chance he received from Keller.

Keller says that being a perfect genetic match for Jay, after 60,000 other potential donors were not, makes her feel special. “At a young age, seeing how my actions could have an impact on the world in a very large way was an extremely powerful lesson for me.”

How to get involved

For information on how to become a donor, contact Gift of Life Marrow Registry at 800-962-7769, or visit www.giftoflife.org.

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