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Mishpacha-Article-February-2011.Pdf HANGING ON BY A FRINGCOLONE:EL MORDECHAI FRIZIS’S MEMBERS COURAG THEEOUS LA SRESPONSET ACT OF THE TRIBE? FOR HIS COUNTRY OPEN MIKE FOR HUCKABEE SWEET SONG OF EMPATHY THE PRESIDENTIAL HOPEFUL ON WHAT FUELED HIS FIFTEENTH TRIP TO ISRAEL A CANDID CONVERSATION WITH SHLOIME DACHS, CHILD OF A “BROKEN HOME” LIFEGUARD AT THE GENE POOL HIS SCREENING PROGRAM HAS SPARED THOUSANDS FROM THE HORROR OF HIS PERSONAL LOSSES. NOW DOR YESHORIM’S RABBI YOSEF EKSTEIN BRAVES THE STEM CELL FRONTIER ON-SITE REPORT RAMALLAHEDUCATOR AND INNOVATOR IN RREALABBI YAAKOV TIME SPITZER CAN THES P.TILLA. FORM LIVA FISCESALLY RSOUNDAV STATE?WEI SSMANDEL’S WORDS familyfirst ISSUE 346 I 5 Adar I 5771 I February 9, 2011 PRICE: NY/NJ $3.99 Out of NY/NJ $4.99 Canada CAD $5.50 Israel NIS 11.90 UK £3.20 INSIDE The Gene Marker's Rabbi Yosef Ekstein of Dor Yeshorim Vowed that No Couple Would Know His Pain Bride 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 kashrus supervisor from Argentina, evolve into a leading expert in the field of preventative genetic research, creating an Bride international screening program used by most people in shidduchim today? 34 5 Adar I 5771 2.9.11 35 QUOTES %%% Rachel Ginsberg His father, Rabbi Kalman Eliezer disease and its devastating progression, as Photos: Meir Haltovsky, Ouria Tadmor Ekstein, used to tell him, “You survived by the infant seemed perfect for the first half- a miracle. I don’t know why, but it must be year of his life. “But soon I noticed he began e spoke little English, knew nothing for a purpose.” to regress. There is nothing as horrible as about genetics, and never set foot After his mother, Pessel, crawled out of watching your child deteriorate in front of Hin a college classroom. So how the rubble of the bombed-out building with you. It began with floppy muscle tone, then did Rabbi Yosef Ekstein, a shochet from her hours-old infant, she hid him for several he couldn’t swallow, and soon it progressed Argentina , manage to create an international months until they could plan their escape. to seizures, paralysis, mental retardation, system that has virtually eradicated the Meanwhile, Rabbi Kalman Ekstein was and blindness.” occurrence of Tay-Sachs and other recessive hiding in a pit. Having contacted smugglers In 1965, there was no testing or diagnostic genetic illnesses common to the Ashkenazic who promised to get them over the border method available for Tay-Sachs, other than Jewish community? to Romania, Pessel and her sister — who seeing a red patch that eventually develops Today, Dor Yeshorim is a household looked like a non-Jew and donned a cross on the retina. Finally, at age two, the now word, at least among families with around her neck — dressed little Yosef up as severely disabled child was diagnosed with shidduch-aged children. Who in the a girl (they had given him a bris and didn’t Tay-Sachs, an incurable genetic disorder that Torah world looks into a prospective Rabbi Ekstein: “We looked on in horror want anyone checking) and took a train to always results in a very young death. match without first ascertaining genetic as he deteriorated and died” the border. At the border station, however, “We looked on in horror as he turned compatibility by calling in their numbers the little group realized they were being into a vegetable and died at age four.” Rabbi Ekstein is to the Dor Yeshorim hotline? But in 1983, The next child, a girl, was also afflicted nothing if not when Rabbi Ekstein first set out to prevent with the disease. “With every child born the determined. Is it because he was others from experiencing what he was so “Hashem Yisbarach suspense was horrible, waiting to see if the a war baby? painfully living through himself, people child would be healthy or not.” thought he was a dreamer at best — a has given us the ability The Eksteins had buried two children, digger of skeletons at worst. but forged ahead faithfully. The third child Maybe it was because he was a war baby to discern genetic was healthy. But the next two … upon us two “copies” of every gene, as long — born while the Budapest building where In 1983, the Eksteins’ fourth Tay-Sachs as there is only one genetic mutation between his mother had taken shelter was being recessive disease baby was born. the two, the carrier will not be affected by bombed — that Yosef Ekstein became such “The Ribono shel Olam knew it would the mutation. a stubborn fighter, forging ahead with his compatibility. Why is take four children for me to get out of my That genetic mutation is still transmitted, program in the face of raised eyebrows and own self-pity and turn my pain outward,” however, and makes the person who receives skeptical smirks. Yet at the beginning of his this more controversial Rabbi Ekstein says. “I had two choices: it a “carrier.” As long as both parents are not personal journey, his only fight was to get than any other despair or action. It took me nearly twenty carriers, there is no danger of their child through his own pain. years to get the message. But He paid being affected by the mutation carried by The year was 1965, and Rabbi Ekstein, information we process me back with interest. Since starting Dor only one parent. However, if both parents a Satmar chassid, shochet, and head of Yeshorim, we’ve been zocheh to five more possess the same genetic mutation, their kashrus in Argentina, had just become a to consider a match?” healthy children. children are at risk of inheriting a matched father to a newborn son. How simple it These samples are the “You have to understand the culture set of mutant genes. These genetic mutations seemed in this generation, he thought. It dividing line of tragedy then. Everyone would hide their sick can pass quietly for generations until two was nothing like the situation his parents children, especially if we were talking about carriers marry; then their children have a faced when he had been born. a genetic disease. It would put a black mark one-in-four chance of being afflicted with on the family. Who would want to do a the disease. followed by nilosh — Hungarian bounty shidduch with a genetically diseased family? Rabbi Ekstein set out to establish hunters who whispered to each other, At the time, we were living in Monroe. a protocol to prevent recessive genetic “They’re ours.” Then, when one of them I was probably the first individual in our diseases by helping matching carriers excused himself to the bathroom, the other community who came out and said, ‘I have a avoid marriage (although both carriers one fell asleep waiting, and the Ekstein trio, problem. I’m bleeding to death. Let’s make could safely marry other non-carriers). hearing the snoring, tore out of the station and sure no one else has to go through this.’ ” Rabbi Ekstein’s vision was to embark hid in the high grass until they could make on a mass screening process to provide contact with the smugglers. Rabbi Ekstein, We’re All Carriers Without genetic protection from diseases that are prevalent who was to arrive the following night, got screening, the Eksteins, and thousands among Jews. But he also wanted to make word that the smugglers had suddenly gone of couples like them, could never have sure to safeguard individuals from the out of business, and so remained hiding in known in advance that they were carriers psychological stigma of carrier status his pit until the end of the war. for Tay-Sachs, a genetic mutation noted for knowledge, and prevent the labeling of The family was finally reunited and its frequency among Ashkenazic Jews of any person or family with carrier status. made their way to Israel, where they lived for Eastern European descent. This is because Going public with Tay-Sachs was nine years before moving to South America, it is biologically impossible for a carrier to groundbreaking in itself, and he took the where Rabbi Ekstein senior established the actually have the disease himself. However, personal risk — even though his wife kehillah in Buenos Aires. if two carriers marry, each child born will didn’t want to go public. How would the However, for the younger Rabbi have a 25 percent chance of falling ill. frum community ever go along with this Ekstein, twenty years removed from war- Truth be told, everyone is a carrier of if there were to be large-scale disclosure? torn Europe, becoming a father proved to be various genetic mutations and recessive So, with the participation and advice far from simple. lethal diseases that we’ll never be aware of leading medical experts and gedolim “For the first six months, my son seemed of — sickle-cell anemia, cystic fibrosis, from the spectrum of Torah Judaism, Dor to be thriving,” Rabbi Ekstein recounts, Tay-Sachs, spinal muscle atrophy, familial Yeshorim’s ground rules were established. describing the shock of his first Tay-Sachs dysautonomia, and Bloom syndrome, to Participants are clearly informed that the One blood test and a baby, the heart-wrenching onset of the name a few.
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