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March 24, 2011 By:
Rachel Vigoda
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Ayelet Galena, 15 months old, needs a bone-marrow transplant.

Every day for a week, Rabbi Adam Wohlberg of Temple Sinai in Dresher woke up exhausted and achy. He had to stay home from services and skipped a few meetings.

But the rabbi wasn't worried. It was all in the name of pikuach nefesh -- saving a life.

Wohlberg's symptoms were brought on by a bad cold, likely exacerbated by treatment he was receiving in preparation for stem-cell donation. He had been warned that the treatment could cause flu-like symptoms.

Wohlberg donated stem cells through the National Marrow Donor Program, which registers potential donors from across the country, then stores their names and tissue types in its "Be the Match" registry, a database 9 million strong.

"Marrow" is in the program's name because stem cells are made in bone marrow, a spongy tissue inside large bones.

A bone-marrow transplant and a stem-cell transplant are essentially the same thing; both infuse stem cells into a patient whose body isn't producing enough healthy cells on its own.

The difference lies in the source of the cells -- whether they're extracted directly from the marrow or from circulating blood. (A third source is from the blood in a newborn's umbilical cord and placenta.)

The rabbi registered with "Be the Match" twice, once 20 years ago when he was in rabbinical school, prompted by an ailing young woman in his father's congregation, and then again about four years ago during a registry drive at his own synagogue.

A few months ago, Wohlberg got a phone call: He was a match.

He had the option to turn down the request for a donation, which didn't cross his mind, and found out almost nothing about the recipient.

"Being Jewish, my belief system is that if I'm in a position to help another human being -- whoever that human being is, whatever religion and wherever they're from -- I'm going to try to help," he says.

Fellow stem-cell donor Noam Kutler, a resident of Washington, D.C., whose wife was once a member of Wohlberg's congregation, echoes the sentiment.

"Of course, I'm more likely to be a match for someone else who's Jewish, but that wasn't a factor when I registered," says Kutler. "It was just about being able to help."

Right now, Seth Galena and Hindy Poupko Galena are trying to find a charitable soul like Wohlberg or Kutler to help their 15-month-old daughter, Ayelet.

The Galenas live in Manhattan, though they're tied to this area: Seth grew up in Lower Merion, went to Torah Academy, and was an active member of Lower Merion Synagogue.

Ayelet, who was born premature, weighed only 2 pounds 7 ounces at birth.

"From the beginning, we never really had a good explanation for why we were seeing the things we were seeing, like low birth weight, colitis, immune deficiency," says Hindy.

"It wasn't until we went to CHOP" -- the Children's Hospital of Philadelphia -- "a couple weeks ago that Ayelet was diagnosed with a rare bone-marrow failure syndrome," continued her mother. "We were advised to get a bone-marrow transplant within six to nine months."

The transplant center the Galenas are working with is searching the international registry -- the "Be the Match" registry is connected to it -- for a donor.

"We were told there are 15 million people in the database worldwide, and the chances of finding a match are 1 in 30,000 people," says Hindy.

"At this point, if there was already a perfect match in there, we would probably already know," she adds.

Getting the Best Match

In order for a transplant to work, the tissue type of the patient and the donor need to be as similar as possible. An ideal match is 12 points, though 10 is often good enough if there are no other options, explains Betty Kelly, the "Be the Match" representative for the tri-state area.

Tissue types are inherited, and so a match is more likely if both people share a race or ethnicity, such as being Jewish.

As the Bone Marrow Donor Registry website of the Israeli health organization Ezer Mizion explains it: "Because Jews in the past lived in isolated communities, they are today more genetically related to each other than to non-Jews."

And out of the millions of potential donors registered worldwide, the website reads, only a very small percentage are of Jewish descent.

About 30 percent of patients in the United States who need stem-cell or bone-marrow transplants have a relative who matches and is able to donate, according to the National Marrow Donor Program. The other 70 percent -- more than 10,000 patients -- have a 66 percent to 93 percent chance of finding a willing and able donor on the "Be the Match" registry, depending on race or ethnicity.

"It's all about genetics," says Kelly. "There's a chance that people from different races would match, but it's not as likely."

In most cases -- about 76 percent, according to the National Marrow Donor Program -- a patient's doctor requests cells from the bloodstream, not marrow.

"The stuff you see on television, that's not accurate," reveals Kelly. "People hear the word 'bone,' and think it's scarier and more painful than it really is. But once they realize it's not that hard, and it could save somebody's life, they usually say, 'Oh, I can do that.'

"I mean, saving somebody's life, reaching out to help -- that's an amazing thing."

The Galenas are setting up several registry drives to sign up willing donors, possibly for Ayelet, or for anyone else in need. Dates and locations are posted on a Facebook page (search for "Ayelet Galena" on Facebook.com) and on BangItOut.com, Seth and his brother Isaac's Jewish comedy website.

Additional drives are listed at BeTheMatch.org and GiftOfLife.org.

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