WINNING THE WAR AGAINST GENETIC DISEASES One Man’s Life’s Mission PART I 18 July 22, 2015 Thirty years ago people weren’t aware of Tay-Sachs, the terrifying genetic disease that plagued Ashkenazic Jewry — because the stigma in aff ected families was so great that they would do everything possible to conceal the truth about their children who inherited a genetic illness. Today the young people in our community — including those at the stage of shidduchim — aren’t even aware of Tay-Sachs because it has been rendered virtually extinct, thanks to one man with a vision, who has fueled his Herculean eff orts with his immense suff ering and with great siyatta diShmaya. As Dor Yeshorim marks 30 years since its founding, Inyan was treated to an exclusive interview with Reb Yosef Ekstein, its venerated founder. With powerful faith and an indomitable spirit he continues to change the landscape of Reb Yosef Ekstein genetic diseases in Jewish communities the world over. BY YITZCHOK SHTEIERMAN 6 Av 5775 19 WINNING THE WAR AGAINST GENETIC DISEASES ‘What Do We Know?’ Reb Yosef Ekstein welcomed Inyan to the Dor Yeshorim “WHEN OUR SON offi ces in Williamsburg where a staff of dedicated professionals work every day to ensure the mission that he promised to execute 30 years ago: that not one more couple in Klal Yisrael, Heaven forbid, should know the anguish that he and his family STOPPED DEVELOPING have endured. Among the employees of Dor Yeshorim are some who carefully examine tests and provide compatibility results, while AND LATER ON STARTED others fi eld the many delicate issues relating to individuals concerned with genetic diseases occurring in their families and helping them avert the worst. Still others coordinate mass REGRESSING WE DID NOT school screenings and community-wide testing events, where hundreds of boys and girls may be screened in one day. And then there are homegrown whiz kids — heimishe yungeleit who KNOW WHAT TO THINK.” continue to surprise even veteran industry experts with their innovations and insights into the world of genetics, genetic diseases and genetic screening. Testing done at the lab. Reb Yossel himself remains the ever unassuming Satmar Chassid, as he passionately relates his personal journey … a journey that has become the journey of many Orthodox communities within Klal Yisrael. “We got married in 5723/1963. When our fi rstborn turned about six months old, he stopped developing. Keep in mind that at that time Tay-Sachs, or for that matter other genetic diseases, were simply not on the radar. It was something that nobody dared speak about. Those who were unfortunate enough to be struck by such tragedies did everything humanly possible to hide it — [lest] they wouldn’t be able to make shidduchim for their other children. And so there was simply no awareness and no knowledge. Similarly, diagnosis of genetic diseases was also primitive, even in the medical community. “You must also understand that in der alter heim, back home in Europe, the general mortality rate among children was very high. My own brother was tragically niftar from an ear infection. My father went out to raise the money to pay the pharmacist in town. By the time he returned, the doctor Avenue. The Rebbe’s strenuous would no longer administer it to my brother because he felt avodah throughout the days of the chances for recovery were too slim, and it wasn’t worth Hoshana Rabbah and Simchas ‘wasting’ the medication on him. Surely genetic diseases Torah was truly legendary existed then, but we don’t know how widespread they were. — he exerted superhuman There was probably no awareness, and there was certainly eff ort in the hakafos until no possibility of being forewarned about joint carrier status, sundown — and he was so weak that so the majority of the deaths of infants and children went he had to rest his legs on the corner of his couch as he leaned undiagnosed. back with his hat tilted on his head. “When our son stopped developing and later began “I handed the Rebbe my kvittel in which I was mazkir our regressing we did not know what to think. We ran from young child. He studied the kvittel and looked up sadly, saying, pediatrician to pediatrician, most of whom said, ‘He’s just lazy,’ ‘Vus ken men vissen? What do we know?’ Now this was a Rebbe or ‘He’s just taking his time.’ who, a while before, when I was mazkir a woman who had “Then we went to the Rebbe [Harav Yoel Teitelbaum, zy”a]. suff ered a stroke, R”l, the Rebbe waved his hand, saying, ‘Es It was Isru Chag Sukkos at the Rebbe’s home on Bedford iz gurnisht — It’s nothing.’ He could wave away a stroke victim 20 July 22, 2015 and say that it will be fi ne — and it was — and here, with a child our hearts more and more, for we were awfully afraid of the who was regressing and for whom the doctors showed little unknown. We were frightened of each passing day.” concern, the Rebbe had nothing to say! We were devastated! “We ran from doctor to doctor, trying not to leave any Strength and Yeshuos From the Tzaddikim stone unturned. The more the doctors seemed to show no “It was bitter. But what is a Yid to do? apprehension, the more we were fi lled with worry and unease. “We made the decision to keep our son at home for as long When our child was about two, we went to a hospital to consult as possible. We also continued building a family, throwing in with yet another specialist. He stood with his team of interns our lot with Hashem and davening that He would grant us around him, and when he saw the notoriously dreaded ‘cherry healthy children. It took enormous strength to maintain our spot’ in the eye of our child (which is a symptom of Tay-Sachs) emunah and bitachon through those trying times. And indeed h e ran out of the room, leaving his underlings to give us the we did merit having healthy children too, burech Hashem. bitter news. It was the fi rst time I heard the words ‘Tay-Sachs.’ “An eitzah that was helpful to me, and I would recommend He couldn’t bear to break the news to us. A mentchliche it to many people today: I would learn, and still do, the entire doctor…, Be’er Mayim Chayim (of the holy Rav Chaim of Chernovitz, “Our lives changed from one of worry and nervousness to zy”a, author of Sidduro shel Shabbos, who is buried in Tzfas in the unfathomable pain of caring for our disabled little boy. the vicinity of the Arizal) on each parashah. The holy words Not too much later, Hashem granted us another child. Our of this giant of Chassidus, and others, truly gave me strength. happiness was short-lived when we suspected the unthinkable. “And then there were the kivrei tzaddikim. Without prior proper diagnosis, we were destined to nurture “This was 35 years ago. There were no fancy, organized and become attached to our precious little child without tours to Europe. But I felt drawn there, to the graves of the knowing if she too would follow in her brother’s footsteps. tzaddikim. I needed to pour my heart out, and I needed a big “And so it was…. We cared for and cherished our newborn yeshuah after undergoing such heartrending experiences. just like any proud parent, not seeing any warning signs, since B’chasdei Hashem, over the years, I did merit many yeshuos they only appear later. But soon enough we noticed! The halt following the many trips that I made to kivrei tzaddikim.” in progress and then the regression was all too familiar.... Reb Yosef recalled: “Today, the tziyun of the holy Rav Our third child was, b”H, healthy. But the next two followed Yissachar Ber of Radoshitz is a great source of yeshuos for the same horrendous pattern! Their adorable fi rst few smiles many, but back then when I began traveling to Poland … their innocence … the fi rst few milestones … all shattered in the ’70s, its location was unknown. Israeli headquarters 15 years ago. 6 Av 5775 21 WINNING THE WAR AGAINST GENETIC DISEASES “This was the beginning. This kept me going. We saw great salvation through davening at the kevarim of tzaddikim, and if I’m allowed to say this, it is these zechuyos that have lent a special siyatta diShmaya to our work over these three decades.” The Historic Pledge: ‘Never Again’ Caring for children with Tay-Sachs is daunting and excruciating. In a nutshell, the child is born with no ability to produce an enzyme that is responsible for breaking down fatty acids that accumulate abnormally in cells, especially in the nerve cells of the brain and spinal cord. During the fi rst period of time after birth, some of the enzyme is still retained from the mother. As time goes on, the enzyme gets depleted, and thus, the child starts to deteriorate, loses mobility and degenerates progressively. This is almost unbearable for parents to watch. Drawing blood for the tests. Reb Yossel related a little of what it was like to care for four Tay-Sachs-affl icted children, and the terrible emotional pain Having perused the sefer Sabba Kadisha, which expounds on he endured while standing beside them in their suff ering. his greatness, and the miracles people had merited by coming “When I would walk through the door, my son would to his tziyun, I felt drawn to this tzaddik, and so I resolved to recognize me but, unlike any other child his age, he was unable search for his kever.