Ayelet Galena's Parents Open Up About Tricky Decision To Have Another Child

After Tragedy, Couple Waited To Pinpoint Gene Mutation

eye on ayelet

By Uriel Heilman

Published June 19, 2014.
  • Print
  • Share Share
  • Single Page

(JTA) — Even before their daughter, Ayelet 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 arrived, the couple had a dilemma: 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 Poupko 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 people 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, overwhelming 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 diagnosed, 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 always 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 options: They could get pregnant 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 mutation that caused Ayelet’s disease could be identified, 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.”

eye on ayelet

The Jewish Daily Forward welcomes reader comments in order to promote thoughtful discussion on issues of importance to the Jewish community. In the interest of maintaining a civil forum, The Jewish Daily Forwardrequires that all commenters be appropriately respectful toward our writers, other commenters and the subjects of the articles. Vigorous debate and reasoned critique are welcome; name-calling and personal invective are not. While we generally do not seek to edit or actively moderate comments, our spam filter prevents most links and certain key words from being posted and The Jewish Daily Forward reserves the right to remove comments for any reason.





Find us on Facebook!
  • Why does ultra-Orthodox group Agudath Israel of America receive its largest donation from the majority owners of Walmart? Find out here: http://jd.fo/q4XfI
  • Woody Allen on the situation in #Gaza: It's “a terrible, tragic thing. Innocent lives are lost left and right, and it’s a horrible situation that eventually has to right itself.”
  • "Mark your calendars: It was on Sunday, July 20, that the momentum turned against Israel." J.J. Goldberg's latest analysis on Israel's ground operation in Gaza:
  • What do you think?
  • "To everyone who is reading this article and saying, “Yes, but… Hamas,” I would ask you to just stop with the “buts.” Take a single moment and allow yourself to feel this tremendous loss. Lay down your arms and grieve for the children of Gaza."
  • Professor Dan Markel, 41 years old, was found shot and killed in his Tallahassee home on Friday. Jay Michaelson can't explain the death, just grieve for it.
  • Employees complained that the food they received to end the daily fast during the holy month of Ramadan was not enough (no non-kosher food is allowed in the plant). The next day, they were dismissed.
  • Why are peace activists getting beat up in Tel Aviv? http://jd.fo/s4YsG
  • Backstreet's...not back.
  • Before there was 'Homeland,' there was 'Prisoners of War.' And before there was Claire Danes, there was Adi Ezroni. Share this with 'Homeland' fans!
  • BREAKING: Was an Israeli soldier just kidnapped in Gaza? Hamas' military wing says yes.
  • What's a "telegenically dead" Palestinian?
  • 13 Israeli soldiers die in Gaza — the deadliest day for the IDF in decades. So much for 'precision' strikes and easy exit strategies.
  • What do a Southern staple like okra and an Israeli favorite like tahini have in common? New Orleans chef Alon Shaya brings sabra tastes to the Big Easy.
  • The Cossacks were a feature in every European Jewish kid's worst nightmare. Tuvia Tenenbom went looking for the real-life variety in Ukraine — but you won't believe what he found. http://forward.com/articles/202181/my-hunt-for-the-cossacks-in-ukraine/?
  • from-cache

Would you like to receive updates about new stories?




















We will not share your e-mail address or other personal information.

Already subscribed? Manage your subscription.