How many of us can say that we’ve changed the world for the better? How many of us can say we’ve changed the world for the better while battling a deadly disease? What if I told you there was such a person and that she lived only two years?
Meet Ayelet Yikara Galena.
Pittsburghers might want to take special note of Ayelet’s story since we have a personal link to her. Ayelet was the great-granddaughter of the late Rabbi Baruch Poupko, of blessed memory, rabbi of Congregation Shaare Torah and pillar of the Pittsburgh Jewish community for more than 60 years.
Ayelet was 2, she suffered from a rare bone-marrow disorder called dyskeratosis congenita and she died on Jan 31. She changed the world for the better because her life and illness lead thousands of Jews and non-Jews to commit themselves to living better lives and because the campaign to save her life may save dozens of others’.
Ayelet has over 5,000 friends on Facebook because her parents, Hindy Poupko, a Jewish communal professional in New York, and Seth Galena, the founder of the hilarious website bangitout.com, decided to fight as hard as possible to save their daughter’s life. In Ayelet’s name, they launched a national campaign to raise awareness and registrants to the national bone marrow registry and to find a donor match for their daughter.
Celebrities like 50cent, Pharrell, Rhianna and Leighton Meester supported the campaign with tweets and blog posts. Thousands of people tuned in online to read about Ayelet every day. At the funeral, Ayelet’s mother, Hindy, said the average number of daily readers of Ayelet’s blog was 14,000. And many, many others got involved by praying for Ayelet, learning Torah for Ayelet, baking challah for Ayelet and most notably registering as bone marrow donors to potentially be a match for Ayelet.
I grew up in Montreal and knew Hindy Poupko and her wonderful family from when I was a kid. I read about Ayelet along with thousands of others and prayed for her. But I also called the National Marrow Donor Program, Be the Match (Marrow.org). I had registered to become a donor years earlier when a friend and a work colleague were both afflicted and eventually died from lymphoma. I wanted to make sure that my information would be available to the Jewish bone marrow registry Gift of Life Foundation (giftoflife.org) in case I was a match for Ayelet. It was, and as I learned, so is all of the marrow registry information nationwide. I also learned that becoming a marrow donor is less painful than it was in previous years and that registering to be a donor is an oral swab that can be done by mail, rather than a blood sample requiring an injection.
The campaign was a success, and a seven-out-of-eight point match was found. On Aug. 31, 2011, at the Cincinnati Children’s Hospital Ayelet got her transplant. But it wasn’t enough to save her and on the last day of January she passed away from this world. She fought to live for as long as she could, and in her life she gave only happiness and joy to her parents and family. As her parents wrote of Ayelet, “her life, her strength, a blessing to so many.”
At Ayelet’s funeral, her mother, father and grandfather Rabbi Reuven Poupko spoke with humor, grief, passion, pain and so much love about the little girl who touched so many. Her grandfather called her “a perfect gift reclaimed by Hashem” and reminded the mourners to take a lesson from Ayelet and “fight for life, fight for joy, for optimism and for hope.” Rabbi Poupko encouraged all who were touched by Ayelet to “pay her tribute” “by choosing life as our tradition guides us to.”
Ayelet’s father, sobbing, described his daughter as someone who “raised our level of faith, emuna” and how her struggle for life and her courage in the face of adversity “changed our nation.” The family also continues to encourage those who want to pay respects to Ayelet to donate to a marrow registry and especially to register as a bone marrow donor. The campaign for Ayelet, which produced her transplant, has resulted in new volunteer bone-marrow donors and remarkably matches for 21 others in desperate need of a bone marrow transplant. Twenty-one lives and who knows how many more may be saved because of Ayelet’s short and remarkable life.
May Ayelet’s memory continue to be a blessing and an inspiration, and may all those who want to honor Ayelet please register to become a bone-marrow donor.
(Abby Wisse Schachter, a Pittsburgh-based columnist, can be reached at firstname.lastname@example.org.)