By Rabbi Shraga Simmons
Hindy Poupko Galena has been hailed on lists of “top Jewish Americans,” mostly for her role as the mother of Ayelet, a beautiful baby girl who captivated the Jewish world with a boundless joy that belied an excruciating chromosomal disease that would claim her life at the age of two.
Hindy and her husband Seth, an advertising executive, attracted international attention with a series of bone marrow drives to find Ayelet a match, and with a no-holds-barred blog, “Eye on Ayelet,” that chronicled the good, the bad, and the ugly of caring for a critically ill baby. The blog drew 14,000 viewers a day, plus thousands more to a Facebook page.
Aish.com spoke with Hindy during a break in her busy day as director of Israel & International Affairs at the Jewish Community Relations Council of New York.
Aish.com: Take us back to the beginning, when Ayelet was born.
Hindy: Ayelet was two months premature, weighing just 2 lbs 7 ounces. At the time we thought it had been a problem with the placenta. But when she was a year old, Ayelet was diagnosed with dyskeratosis congenita, a rare genetic disorder that hinders growth and affects almost every system in the body. So we understood that the premature birth was related to her disease, which had already begun in utero.
Aish.com: Is this a particularly “Jewish” disease?
Hindy: No, there are only 120 cases worldwide, so it’s not associated with any ethnic group. But in needing a bone marrow donor, the best match for Ayelet’s HLA (Human Leukocyte Antigen) tissue typing was most likely of Jewish-Ashkenazi background.
The problem is that the Jewish community is under-represented in the bone marrow registry. So we launched high-profile donor drives, where people could show up and swab their cheek tissue. Thanks to some well-connected friends and organizations, we got attention from celebrities like 50 Cent and Rihanna who heard about Ayelet and tweeted about her cause. That’s when this took on a life of its own.
Aish.com: Throughout this entire process, you and your husband chronicled the many ups and down in a blog. What prompted you to take such a public approach to your personal life?
Hindy: These donor drives were successful because the community got behind us and we felt that we owed them our honesty about the situation. It proved very comforting for us, to have so many caring people to share with.
We also saw this as a way to help other parents with sick children feel that it’s okay to talk about what they’re going through. We wanted to show that illness is not something that people should be embarrassed about or stigmatized.
Aish.com: What was the outcome of these bone marrow drives?
Hindy: Already 60 matches have been made for people needing transplants. We never found a perfect match for Ayelet, so we had no choice but to move forward with an imperfect match. We did the bone marrow transplant when Ayelet was 21 months old.
Aish.com: Was the transplant successful?
Hindy: Yes, Ayelet was fully engrafted. At the same time, the bone marrow transplant was never expected to be a cure. It was one among a series of things that we’d have to do. But after 100 days post-transplant she contracted a lung infection. She was in a very compromised state, with a weakened immune system, and a disease that hinders her ability to heal normally. It was a very serious situation and we lost her.
Aish.com: There are other sick kids, and yet Ayelet captured so much attention. Over 1,500 people attended her funeral. What was so special about her?
Hindy: There was something about Ayelet’s persona and spirit that people were really drawn to. She was always smiling and full of life, and people wanted to know her story. Even in times of severe pain she was in good spirits.
I also think that the way my husband wrote the blog drew people in. It didn’t hide any of the tough stuff, or paint a rosy picture. It was very human, with a lot of humor and real moments. We didn’t just talk about the lab reports, but also about our experience celebrating Shabbat in the ICU. In the age of digital media, people are craving authentic communities, and Ayelet’s story offered something that people wanted to be part of.
Aish.com: In what ways did these people get involved, other than to read the blog?
Hindy: There was so much that happened beyond the digital space. Thousands of prayers were said on Ayelet’s behalf, and people emailed us saying they’re lighting Shabbos candles for the first time, as a merit for Ayelet. It was incredible to hear from strangers who were taking real action to help. These are the things that kept us going.
Aish.com: After Ayelet’s passing, what is the enduring message these people are left with?
Hindy: Parents got their kids involved, and for kids it’s very hard to understand when you do the right thing and the outcome is different than you hoped for. That can be a very confusing experience. We don’t know why bad things happen, especially horribly tragic things. But we can look at the good that came of this – she was the catalyst for breaking cultural and religious boundaries. Ayelet became a unifier for many people coming together to fight for the life of a little girl. All of these positive feelings – this spirit of unity – continue to live on.
Aish.com Tell me about your own transformation and journey through this.
Hindy: For me this was a profound lesson in what it means to be part of the Jewish community. It was fascinating and inspiring to see how different pockets of the Jewish community came out for us. A chassidish mother from Brooklyn dropped off challah literally every Friday for months. A Chabad rabbi arranged an apartment for us after ours was destroyed by fire. We didn’t belong to their synagogue, but they stepped up to the plate. And it made me think: Would I do the same for them? If a chassidish mother in Brooklyn needed my help, would I step up for her like she stepped up for me?
This made me rethink my notion of community. With so many Jews in New York, it’s easy to be particular about the kind of Jews you associate with. We tend to hang out with only those who fit our particular understanding of what it means to be Jewish. But our experience with Ayelet threw all those stereotypes away and it made us feel part of the Jewish community in the broadest sense. It was incredibly empowering.
Lately, Seth and I have been speaking to different Jewish audiences, trying to keep this message alive – the importance of community and being there for each other.
Aish.com: How did Ayelet’s illness affect your relationship with God?
Hindy: I’ve never felt any inkling to “blame” God, because that’s not the way I view the world. I’m devastated that Ayelet was born with this illness, but it never made me question, “Why would God do this to me.” Faith in God means being okay with some degree of uncertainty, and accepting that there is no final answer when these things happen.
On the contrary, I very much see the Divine nature of this whole thing: Ayelet was meant to be in this world, yet her body was not equipped to be here for long. We were chosen to be her parents, and I feel blessed that we had her.
Aish.com: Tell me about your final days with Ayelet.
Hindy: She was in the hospital in Cincinnati, on an oscillator, which is a serious breathing device. We knew that her lungs were weak, but we were used to these things and figured she’d come out of it.
Seth and I very much complemented each other in terms of strengths and weaknesses, and we took turns staying with her. On Sunday I was with Ayelet when she started having kidney trouble. I wasn’t particularly alarmed because we were so used to these types of complications. Seth was in New York and I suggested that he take the last flight out to join me. Once he got on the plane, Ayelet’s kidneys improved quickly, so it seemed unnecessary that he came. But Ayelet quickly took a turn for the worse and within 24 hours she passed away.
The fact that we were all there together, when we were usually taking turns, was a great comfort to us. For that I am eternally grateful.
Aish.com: Obviously you never just “move on” after the death of a child. What have you found most helpful in dealing with your grief?
Hindy: The best Jewish response to a tragedy is: What positive action can I take in response? A few months ago we had a big event which raised hundreds of thousands of dollars for the Gift of Life bone marrow registry. We also presented the Ayelet Galena Courage Award to kids who are fighting serious illness. Even at such a young age Ayelet inspired us and so many others with her cleverness, warmth, optimism and courage. So giving those kids a boost of hope was really keeping in Ayelet’s spirit and memory.
Aish.com: There’s a long list of undertakings to perpetuate Ayelet’s memory – toy drives, a playground in Israel, even “Ayelet Kindness” playing cards. What project has been the most meaningful to you?
Hindy: A lot of money was donated to Cincinnati Children’s Hospital in Ayelet’s memory. The doctors told us that one of the comments they hear most often is that the walls in the bone marrow transplant center are bare, like most hospital walls. So we came up with the idea of creating an art installation – to take large beautiful photographs of children a few years post-transplant, showing them living life to the fullest. We included information about the date of the child’s transplant, and what disease they had. So instead of bare walls, there are now pictures of hope, of kids who have been through very similar circumstances and are now doing great.
Aish.com: Your father is Rabbi Reuben Poupko of Montreal. How did growing up as the daughter of a prominent rabbi influence your experience with Ayelet?
Hindy: I love being the daughter of a rabbi. Growing up in a rabbi’s house, you learn at a young age how to relate to people from all walks of life and you also grow up seeing both joy and pain. I remember many Sundays visiting sick people in the hospital with my dad, so I understood at a young age that things don’t always work out the way we plan them. This prepared me somewhat for what I would later deal with.
This also gave me a more realistic expectation of what clergy can provide in times of grief. People often turn to their rabbis and demand an answer to, “Why did this happen?” I didn’t go through the period of mourning with unrealistic expectation of what can be said to comfort me. I knew that the best thing any rabbi can say is, “We don’t know why these things happen. All we can do is find the meaning in it, and carry that through.” Ayelet fought for life, and we owe it to her to live to the fullest, to ensure that her spirit continues to transform our lives.
Aish.com: Finding a bone marrow match was crucial to your process of helping Ayelet. For the future, are there ways to make that easier for others?
Hindy: Gift of Life has a few hundred thousand American Jews in their registry. That’s not enough. We need to find a way to make this a systematic effort, both in the Jewish community and the general public. It could be having pediatricians at a kids’ “18th birthday checkup” asking if they want to join the bone marrow registry. Or it may involve partnering with Birthright or Hillel on campus, or even a Bar-Bat Mitzvah program where kids get an email when they turn 18. In Israel when kids register for the army they are all swabbed and included in the registry. In the U.S. we have yet to find that “magic moment” solution.
Aish.com: You recently dedicated a Torah scroll in Montreal in Ayelet’s memory.
Hindy: That was one of the most unexpectedly uplifting experiences we’ve had. I had never been to a Torah scroll dedication before, so I had no idea what to expect. The emotion of that night was so intense, and we felt as though that little Torah was embodying Ayelet in some way. It felt like a rebirth.