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June 27, 2014

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PAGE 16A HERITAGE FLORIDA JEWISH NEWS, JUNE 27, 2014 Piha Studio Seth Galena and Hindy Poupko, on his right shoulder, celebrate the birth of their son Akiva at his bris, June 15, 2014. By Uriel Heilman NEW YORK (JTA) - Even before their daughter, Ay- elet Galena, was diagnosed with a rare bone marrow disease called dyskeratosis congenita around her first birthday, parents Hindy Poupko and Seth Galena knew they wanted to have more children. But once the diagnosis ar- rived, the couple had a dilem- ma: There was a fair chance their next child would have the life-threatening genetic disease, too. Over the course of the next year or so, Galena and Poup- ko didn't have much time to think about other kids. They were busy tending to Ayelet, whose struggle they decided to document on a blog, Eye on Ayelet. It quickly gained a following in the thousands. While her kidneys failed her, Ayelet became an Internet sensation. Galena dubbed the phenomenon Ayelet Nation. When Ayelet died on Jan. 31, 2012, less than two months after her second birthday, thousands of peo- ple from around the world who had never met the little Orthodox Jewish girl from Manhattan's Upper West Side seemed to share in her parents' grief, overwhelm- ing Poupko and Galena with condolence messages, food packages and gifts. This month, good news finally arrived in the Galena- Poupko household: The couple had a new baby, a healthy boy born two weeks ago. On Sunday at his bris, they named him Akiva Max Galena. The journey that led to their second child was no easy feat, as Poupko and Galena told JTA this week in an interview squeezed between feedings and diaper changes. When Ayelet was diag- nosed, she immediately was tested for the seven known genetic mutations that cause dyskeratosis congenita. But the results showed she didn't have any of them, which meant her illness was caused by an unknown genetic mutation that could not be identified by prenatal screening. "From that moment we al- ways knew that having more children and confidently healthy children would be a challenge," Poupko said. "They couldn't even tell us if the disease was inherited or not." The couple had two op- tions: They could get preg- nant again and risk having another sick child who might suffer and die young, or they could wait for the science to catch up. If the genetic mu- tation that caused Ayelet's disease could be identi- fied, they could do in-vitro fertilization and test the embryos before implanting them in the uterus to make sure they didn't carry the disease-causing gene. The couple decided to wait. "A lot of people would say lightning doesn't strike twice, but this is a science," Poupko said. "Statistically, we knew the likelihood of us having another child with the disease was 25 percent." They joined a National Institutes of Health study led by Dr. Sharon Savage of the National Cancer Institute to find the genetic causes for a number of inherited bone marrow diseases. The couple was told the process could take a few years, and by the end there would be only a 50-50 chance that the genetic mutation that caused Ayelet's illness would be found. While they were dealing with Ayelet's tests, hospital stays and a bone-marrow transplant at Cincinnati Children's Hospital Medical Center--and eventually her tragic passing--researchers at the NIH were working on the genetics in consulta- tion with scientists at the Rockefeller Institute, Mount Sinai Hospital and Johns Hopkins University School of Medicine. With Poupko in her late 20s, the two figured they could afford to give the NIH study some time before try- ing for another baby. "At that point we weren't ready to roll the dice and take a chance," Galena recalled. "I think in a strange way itwas helpful, because it gave us the time to heal from Ayelet's death. For both of us thatwas a good time for mourning Ayelet properly. It took me the full two years to really start thinking about things in a forward-thinking way." In the year after Ayelet's death, Poupko and Galena grappled with their grief, worked on reconnecting with each other and im- mersed themselves in rou- tine and adventure. At work, Poupko was busy at the Jewish Community Relations Council of New York, fighting the boycott, divestment and sanctions movement against Israel and keeping up the campaign for public pressure to counter Iran's nuclear program. Galena went back to work at VML, a digital marketing and advertising agency. After the massacre in Newtown, Conn., in December 2012, Galena and some colleagues built a tribute website, Ta-, dedicated to the memory of the young- est Sandy Hook shooting victim, Jewish 6-year-old Noah Pozner. When the 30-day mourn- ing period following Ayelet's death ended, Poupko and Galena went on a healing trip to Israel, and later they flew to Thailand on a trip Poupko describes as "awesome." As longtime pillars of the community of young Modern Orthodox Jews on the Upper West Side, they also leaned on their many friends and family members, whom Galena credits with help- ing the couple through the mourning process. They always were eager for word of progress on the genetic front, but Poupko says they tried not to be consumed by it. "I wasn't crippled with anxiety," Poupko said. "I felt like one way or another we would figure out a way to build a family together. I just didn't know when or how." But waiting was not easy, and it was made more diffi- cult by inquiries about why the couple wasn't having more children. "I'm not exactly a patient person. It was definitely a challenging time for our lives," Poupko said. "We were very open about it even though itwas painful. People who were close to us under- stood that we were waiting to safely have more children." Unlike with most NIH studies, in this one the re- searchers doing the genetic work were in direct contact with Galena and Poupko, who would call weekly for updates. The good news finally came on April 11, 2013. Poupko remembers where and when she was when she got the call. After the NIH nurse on the phone told her that Ayelet's genetic muta- tion had been found, Poupko broke down, sobbing. "We had been following up, calling them nonstop, but they had never called us before," she recalled. "It was amazing. We knew at that moment that we would have that future we'd always wanted." From there to getting pregnant was a relatively short road, but not an un- complicated one. The couple went through a process called preimplantation ge- netic diagnosis, or PGD, in which the female's egg and the male's sperm are mixed in a laboratory to produce embryos. Those embryos were then tested for the mutant gene. The healthy ones were implanted via IVF. Late last year, Poupko, now 30, got pregnant. In his bris speech, Galena offered a special thanks to the NIH, "who told us to give them five to 10 years to find the genetic mutation" but found it in less than two. Now that they have a new baby, Poupko says she wants to help spread the message within the Jewish commu- nity about the importance of genetic testing--particu- larly in the haredi Orthodox community. Haredi couples whose genetic screenings show both members are carriers for certain genetic diseases often are told to break up, but Poupko says new genetic research makes it possible for such couples to produce healthy babies. "Modern medicine gives people options they never thought possible," Poupko says, citing her own experi- ence of being able to screen out problematic embryos before their implantation. "The Jewish community needs to be educated on this. Ashkenazi Jews in particular need to be up to date and knowledgeable." She recommended JScreen as one useful re- source for genetic testing for Ashkenazi Jews. Galena says the experience of the recent pregnancy and b rthwas an emotional roller coaster. "Even when we found out we were pregnant it was still a bittersweet process," Galena said. "The thought of being parents again opened up more wounds for us about mourning Ayelet." With the new baby boy now at home, his big sister doesn't feel far away, Galena said. "A lot of having a new child is thinking about the old one, so Ayelet's definitely on our minds at all times," he said. "Akiva should know what a great older sister he had." By Linda Gradstein The Media Line Almost a week after three Israeli teenagers were kid- napped, presumably by the Islamist Hamas movement, Israel has expanded its crack- down to include "anything green" as one Israeli army of- ricer referred to the traditional Hamas color. Some 300 Pales- tinians affiliated with Hamas have been arrested in the past week, including several Pales- tinian parliamentarians and more than 50 prisoners who had been released in a prisoner exchange for a captured Israeli soldier in 2011. Israeli officials say that their main goal is to find the teenagers, who they believe are still in Judea and Samaria. "We don't have any con- crete information that they are alive and we don't have any concrete information that they're not alive" Israeli army spokesman Peter Lerner told The Media Line. "Right now we're proceeding on the assumption that the boys are alive and that they are being held in the West Bank." Lerner said a total of nine brigades (three more than usual) have searched more than 800 different locations throughout Judea and Sa- maria. They have found hun- dreds of rifles and machine guns, but have yet to find out where the three Israelis are being held. Lerner said a secondary goal of the widespread army operation is to "take a toll on Hamas." "We are targeting all levels of the organization, from the tactical to the operational to the institutional to the leader- ship," he said. Lerner said that in the past year and a half, there had been 64 kidnapping attempts simi- lar to the one that succeeded last week, and has riveted Israeli society. He said that Is- rael is convinced that Hamas is behind the kidnapping, although there have been no claims of responsibility and no demands presented. Palestinians warn that Israel's crackdown on Hamas could backfire. "It seems they are taking advantage of this incident and trying to pursue several different agendas," Ghassan al-Khatib, a former Palestin- ian government spokesman told The Media Line. "They want to crack down on Hamas, expand settlements in the West Bank, and destroy the unity agreement between Hamas and Fatah." That unity agreement, signed last month, is meant to pave the way for Palestinian elections. Israel has sharply criticized that agreement, saying that Fatah, which is headed by Palestinian Presi- dent Mahmoud Abbas, has chosen Hamas over peace with Israel. Abbas has come out sharply against the kid- napping, and said he will continue security coordina- tion with Israel. The United States has asked both sides to "exercise restraint" dur- ing what the State Depart- ment spokesman called "an incredibly sensitive and difficult circumstance on the ground." Ghassan AI-Khatib said that Israeli troops raided Bir Zeit University, where he is a professor, in the middle of the night, confiscating computers and "anything green," including Palestin- ian and Hamas flags, Khatib said. The university recently held elections for the student council so there were flags and other brochures taken. "The Israeli actions will clearly reduce the Hamas profile, both political and operational, in the West Bank," Joseph Alpher, a political analyst and former Mossad intelligence official told The Media Line. "But if there's a broader goal of separating Hamas and Fatah it's not clear if it will succeed." Alpher said it is not pos- sible to know if the teenagers are alive or not. "It is possible that some- thing went wrong at the beginning of the kidnapping and they were killed," he said. "But it is also possible that the full court Israeli press is preventing the captors from raising their head and mak- ing demands for a prisoner exchange. Hamas abducts Israelis not to kill them but to trade them for prisoners." There are some 5000 Pal- estinian prisoners in Israeli jails today. In 2011 Israel traded 1027 Hamas prison- ers in exchange for captured Israeli soldier Gilad Shalit, who was held in Gaza for more than five years. Israeli Prime Minister Benjamin Netanyahu called Mahmoud Abbas this week- the first time the two men have spoken directly in over a year. But Israel's response to Abbas's comments in Saudi Arabia was lukewarm, with Israeli officials saying that actions are more im- portant than words. Some say that once the incident is resolved, espe- cially if the boys are found alive with the help of the Palestinian security forces, it could be an opportunity to renew peace talks, which failed after nine months of intensive effort by US Sec- retary of State John Kerry. "Hamas was losing strength everywhere, es- pecially in Gaza," Ghassan Khatib said. "But our polls show that a systematic de- cline in support for violence. Most Palestinians are afraid of a possible return to vio- lence and losing the security of law and order."