MONTREAL — Ayelet Yakira Galena will turn two years old next month, largely thanks to a bone marrow cell transplant she received at Cincinnati Children’s Hospital at the end of August to treat a very rare and deadly bone marrow disorder.
It’s a saga, according to her mother, Hindy Poupko-Galena, that is by no means over. The procedure itself – which was actually more like a transfusion – was a success. The marrow was a “seven out of eight” match, but the baby, the granddaughter of well-known local rabbi Reuben Poupko, is still at daily risk of infection due to the immunosuppressant drugs she needs to take.
“The situation is better, but still precarious,” Poupko-Galena said in a telephone interview from Cincinnati, where she has remained at her daughter’s side even while resuming her job “remotely” as director of Israel/international affairs at the Jewish Community Relations Council in New York City.
It’s also a saga, she added, that has resulted in marrow matches being found for a dozen others in need of transplants, directly as a result of the drive to find a match for Ayelet.
By coincidence, the baby’s grandmother, Arna Poupko Fisher, lives in Cincinnati and has been able to provide support to her daughter and grandchild.
Ayelet’s story not only concerned family and friends, but also won the attention of media and pop celebrities in New York City, where Poupko-Galena and her husband, Seth Galena, live, as the urgent search for a donor match began last February.
Besides Montreal and Toronto, “Get Swabbed for Ayelet” searches took place in New York and elsewhere, and the story made the the New York Daily News and local television newscasts and won the vocal support of celebrities such as Rihanna, Eva Mendes, 50 Cent and Leighton Meester.
That was in large part due to the efforts of DKMS Americas, which recruits bone marrow donors and goes all-out to enlist the support of anyone it can toward that goal. Ayelet’s father, an account supervisor at VLM Advertising, also got rock band Linkin Park and rapper Pharrell involved last May. People were wearing Ayelet Galena T-shirts during the marrow drive, and hundreds of others continue to relay their prayers and moral support to an Ayelet Galena fan page on Facebook that chronicles her day-to-day status.
The devastating news of Ayelet’s condition came almost a year ago, in January 2011, when she was born at 32 weeks gestation. She failed to thrive properly and was diagnosed with colitis. She underwent a battery of tests at the Children’s Hospital of Philadelphia that led to a diagnosis of dyskeratosis cogenita, an extremely rare genetic disease marked by bone marrow failure.
The good news, Poupko-Galena said, was that she and her husband were told that a successful bone marrow transplant could provide a long-term cure.
After the match was found, “the most precarious part was when her whole immune system was shut down to get her ready for the new cells,” Poupko-Galena said.
Now, it’s a matter of allowing those new cells to take hold and rebuilding Ayelet’s immune system.
While the situation remains day to day, Poupko-Galena said, she, her husband and the rest of the family and their supporters remain optimistic.
“It’s been a very trying situation,” Rabbi Poupko told The CJN, “but the outpouring of support has been incredible. It’s been comforting in a difficult time to know that you’re not alone.”
Poupko-Galena said the crisis the family faced never once made them question their faith.
“People are only dealt the cards they can handle,” she said.