The Gene Marker’s Promise

dor yeshorimONLINE EXCLUSIVE: [Full article to appear in this week’s Mishpacha Magazine] Rabbi Yosef Ekstein of Dor Yeshorim Vowed that No Couple Would Know His Pain. When Rabbi Yosef Ekstein’s fourth Tay-Sachs baby was born, he knew he had two options – to fall into crushing despair, or

take action.

“The Ribono Shel Olam knew I would bury four children before I could take my self-pity and turn it outward,” Rabbi Ekstein says. But he knew nothing about genetics or biology, couldn’t speak English, and didn’t even have a high school diploma. How did this Satmar chassid, a shochet and kashrussupervisor from Argentina, evolveinto a leading expert in the field of preventative genetic research, creating an international screening program used by most people in shidduchim today? 

Rachel Ginsberg

He spoke little English, knew nothing about genetics, and never set foot in a college classroom. So how did Rabbi Yosef Ekstein, a shochetfrom Argentina , manage to create an international system that has virtually eradicated the occurrence of Tay-Sachs and other recessive genetic illnesses common to the Ashkenazic Jewish community?

Today, Dor Yeshorim is a household word, at least among families with shidduch-aged children. Who in the Torah world looks into a prospective match without first ascertaining genetic compatibility by calling in their numbers to the Dor Yeshorim hotline? But in 1983, when Rabbi Ekstein first set out to prevent others from experiencing what he was so painfully living through himself, people thought he was a dreamer at best — a digger of skeletons at worst.

Maybe it was because he was a war baby — born while the Budapest building where his mother had taken shelter was being bombed — that Yosef Ekstein became such a stubborn fighter, forging ahead with his program in the face of raised eyebrows and skeptical smirks. Yet at the beginning of his personal journey, his only fight was to get through his own pain.

The year was 1965, and Rabbi Ekstein, a Satmar chassid, shochet, and head of kashrus in Argentina, had just become a father to a newborn son. How simple it seemed in this generation, he thought. It was nothing like the situation his parents faced when he had been born.

His father, Rabbi Kalman Eliezer Ekstein, used to tell him, “You survived by a miracle. I don’t know why, but it must be for a purpose.”

After his mother, Pessel, crawled out of the rubble of the bombed-out building with her hours-old infant, she hid him for several months until they could plan their escape. Meanwhile, Rabbi Kalman Ekstein was hiding in a pit. Having contacted smugglers who promised to get them over the border to Romania, Pessel and her sister — who looked like a non-Jew and donned a cross around her neck — dressed little Yosef up as a girl (they had given him a bris and didn’t want anyone checking) and took a train to the border. At the border station, however, the little group realized they were being followed by nilosh— Hungarian bounty hunters who whispered to each other, “They’re ours.” Then, when one of them excused himself to the bathroom, the other one fell asleep waiting, and the Ekstein trio, hearing the snoring, tore out of the station and hid in the high grass until they could make contact with the smugglers. Rabbi Ekstein, who was to arrive the following night, got word that the smugglers had suddenly gone out of business, and so remained hiding in his pit until the end of the war.

The family was finally reunited and made their way to Israel, where they lived for nine years before moving to South America, where Rabbi Ekstein senior established the kehillahin Buenos Aires.

However, for the younger Rabbi Ekstein, twenty years removed from war-torn Europe, becoming a father proved to be far from simple.

“For the first six months, my son seemed to be thriving,” Rabbi Ekstein recounts, describing the shock of his first Tay-Sachs baby, the heart-wrenching onset of the disease and its devastating progression, as the infant seemed perfect for the first half-year of his life. “But soon I noticed he began to regress. There is nothing as horrible as watching your child deteriorate in front of you. It began with floppy muscle tone, then he couldn’t swallow, and soon it progressed to seizures, paralysis, mental retardation, and blindness.”

In 1965, there was no testing or diagnostic method available for Tay-Sachs, other than seeing a red patch that eventually develops on the retina. Finally, at age two, the now severely disabled child was diagnosed with Tay-Sachs, an incurable genetic disorder that always results in a very young death.

“We looked on in horror as he turned into a vegetable and died at age four.”

The next child, a girl, was also afflicted with the disease. “With every child born the suspense was horrible, waiting to see if the child would be healthy or not.”

The Eksteins had buried two children, but forged ahead faithfully. The third child was healthy. But the next two …

In 1983, the Eksteins’ fourth Tay-Sachs baby was born.

“The Ribono shel Olam knew it would take four children for me to get out of my own self-pity and turn my pain outward,” Rabbi Ekstein says. “I had two choices: despair or action. It took me nearly twenty years to get the message. But He paid me back with interest. Since starting Dor Yeshorim, we’ve been zocheh to five more healthy children.

“You have to understand the culture then. Everyone would hide their sick children, especially if we were talking about a genetic disease. It would put a black mark on the family. Who would want to do a shidduch with a genetically diseased family? At the time, we were living in Monroe. I was probably the first individual in our community who came out and said, ‘I have a problem. I’m bleeding to death. Let’s make sure no one else has to go through this.’”

We’re All Carriers Without genetic screening, the Eksteins, and thousands of couples like them, could never have known in advance that they were carriers for Tay-Sachs, a genetic mutation noted for its frequency among Ashkenazic Jews of Eastern European descent. This is because it is biologically impossible for a carrier to actually have the disease himself. However, if two carriers marry, each child born will have a 25 percent chance of falling ill.

Truth be told, everyone is a carrier of various genetic mutations and recessive lethal diseases that we’ll never be aware of — sickle-cell anemia, cystic fibrosis, Tay-Sachs, spinal muscle atrophy, familial dysautonomia, and Bloom syndrome, to name a few. But because our parents bestow upon us two “copies” of every gene, as long as there is only one genetic mutation between the two, the carrier will not be affected by the mutation.

That genetic mutation is still transmitted, however, and makes the person who receives it a “carrier.” As long as both parents are not carriers, there is no danger of their child being affected by the mutation carried by only one parent. However, if both parents possess the same genetic mutation, their children are at risk of inheriting a matched set of mutant genes. These genetic mutations can pass quietly for generations until two carriers marry; then their children have a one-in-four chance of being afflicted with the disease.

Rabbi Ekstein set out to establish a protocol to prevent recessive genetic diseases by helping matching carriers avoid marriage (although both carriers could safely marry other non-carriers). Rabbi Ekstein’s vision was to embark on a mass screening process to provide protection from diseases that are prevalent among Jews. But he also wanted to make sure to safeguard individuals from the psychological stigma of carrier status knowledge, and prevent the labeling of any person or family with carrier status.

Going public with Tay-Sachs was groundbreaking in itself, and he took the personal risk — even though his wife didn’t want to go public. How would the frum community ever go along with this if there were to be large-scale disclosure? So, with the participation and advice of leading medical experts and gedolimfrom the spectrum of Torah Judaism, Dor Yeshorim’s ground rules were established. Participants are clearly informed that the Dor Yeshorimprogram does not include information about personal carrier status; they are only informed if their prospective match is compatible or not.

Today, Dor Yeshorimscreens for fatal or catastrophically debilitating recessive genetic diseases as part of its program. Participation in the chareidi community, where dating occurs solely through the shidduchsystem, hovers around 98 percent, and Tay-Sachs has been virtually eradicated from this community. The Kingsbrook Medical Center Tay-Sachs unit, which once had a long waiting list, recently closed due to the success of Dor Yeshorim.

No One Showed Up Rabbi Eksteinhas fought an uphill, sometimes vertical battle to achievethese results. Turnout for the first screening in 1983 was dismal: forty-five people came, mostly as a personal favor after efforts of pleading and door-knocking. The next year it was up to 175 people. His breakthrough came when one school agreed to screening; and today, screening is standard in most religious schools, and its 80,000 calls a year are the first step in the initial research of a shidduch prospect.

Rabbi Ekstein, whose goal was to spare people the pain and suffering he knew so well, didn’t take the difficult start personally.

“In the beginning, people would say, ‘Who is this Ekstein who thinks he can decide who will marry who?’ But the minute they have a problem, they come running. Someone who tastes the tragedy is no longer a critic. There was a very chashuve askan who was against me in the beginning. Then, when he was looking for a shidduchfor his daughter, the father of the boy insisted on Dor Yeshorim, so he had no choice.

“Well, it came back not compatible. So now this askanknows his daughter is a carrier of something, and he’s in hysteria. He calls me. ‘What will be with my children who are already married? I never tested them. What if their spouses are carriers?’ So I told him, those not yet married you test, those already married you have bitachon.’”

For some, the very idea of screening was confusing. Isn’t every baby, no matter how ill or unviable, a holy neshamah? Why not forgo the testing, just go ahead with the shidduch, and leave the results up to Hashem? Doesn’t this get too close, they asked, to the philosophy of eugenics, making “superior” babies by selective breeding?

Rabbi Ekstein waves his hand in dismissal. He’s been through the excruciating pain.

“This,” he says, “is why the program is premarital. We do not screen married people. We do not even screen engaged couples. By that time, you’re off our radar screen. This has nothing to do with whether or not a baby should be born, chas v’shalom. This is one more piece of information, a genetic point of view, that a prospective couple can use to decide whether a shidduchshould go forward. Hashem Yisbarachhas given us the ability to discern genetic recessive disease compatibility. Why is this more controversial than any other information we process to consider a match?”

Once you’ve been on the other side, he says, you can’t look at the one who says “anyway, it won’t happen to me” without wincing.

Full article to appear in this week’s Mishpacha Magazine.

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  1. Kudos to Rabbi Ekstein, the entire jewish community owes him a tremendous amount of hakoras hatov. Thank you and keep up the valuable work!!

  2. Unfortunately, my family has a history of genetic illness and were it not for Dor Yesharim, no one would even contemplate marrying us. I would like to publicly thank Dor Yesharim and specifically Rabbi Ekstien who has made it his life mission to help our families. People do not even know how much he does for families behind the scenes. He has been very instrumental in helping consummate problem shidduchim. He has helped individual families research some VERY rare genetic illnesses and he was the one that was instrumental in identifying the familial dysautonomia gene by funding the Fordham University research group led by the Tzaddik Dr. Berish Rubin. Dr. Rubin has made it his life mission to help identify genetic illnesses but the driving force behind him is a great Tzaddik by the name of Rabbi Ekstien. Also, one misconception that people has is that they think that Dor Yesharim. And the people at the top are getting rich. Just you should know that if you do these tests privately it would cost a lot more.

  3. Although Dor Yesharim is an amazing organization, there are those that contend that who are we to play g-d. They say that these things are meant to be hidden and up to Hashem to decide. Another issue I commonly hear is where to draw the live. With genetic testing today, they can find children likely to be obese or short, those with blond hair and those with poor vision. It becomes a “slippery slope” which concerns some people.

  4. Reply to #6: that is totally ridiculous. Firstly, the very small minority that is not behind dor yesharim, just don’t understand genetics. Dor yesharim follows big rabbanim and the line is drawn where offspring will endure SEVERE suffering and untimely death. Since they do PRE-MARITAL testing only, there is no chashash that someone may decide not to have a child because of obesity or the like. Even the rabbanim that did initially speak out vocally against the testing because of hashkafa issues such as playing g-d etc, once they had a personal problem in their families, they did a 180 degree turn and now are adamant that their offspring be tested. Go out and ask the big rabbi’s such as Rav Eliyashiv, Rav Shteinam and Reb Chaim Kanievsky


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