Ayelet Yakira Galena (December 5, 2009 – January 31, 2012) was born with a rare genetic disorder dyskeratosis congenita and was famous for the massive outpouring of support she attracted, including bone marrow drives that led to finding 95 lifesaving matches.
Ayelet’s fight for life was documented on her parent’s blog with an unexpected sense of humor, compassion and religious identity while in the hospital.
Ayelet is the daughter of Seth Galena and Hindy Poupko, an Orthodox Jewish couple, and lives on the Upper West Side of Manhattan.
Ayelet was born at NYU’s Langone Medical Center two months prematurely weighing just 2 lbs 7 ounces. She spent six weeks in the neonatal intensive care unit, feeding and growing, before being released.
When she was a year old, Galena was diagnosed with dyskeratosis congenita of the HH variant.
She presented with IUGR, colitis, immune deficiency, cerebellar hypoplasia, microcephaly and very short telomeres.
The Galena family partnered with Gift of Life Bone Marrow Foundation to set up many drives in the hopes of finding Ayelet a perfect bone marrow donor match.
Her fight got the attention of many celebrities including 50 Cent, Rihanna, and Leighton Meester who tweeted for Ayelet.
She underwent a Bone Marrow Transplant on August 31, 2011 with an unrelated 7/8 donor.
Ayelet’s family set up a Tumblr blog when they transported her from Sloan Kettering Hospital to Cincinnati Children’s Hospital Medical Center, where they would do the transplant, to keep their family and friends updated on her progress.
Through Facebook, Twitter and their ‘Eye on Ayelet’ family blog their story gained support across the Jewish world and beyond with a unique blend of health updates, family and religious life and a sense of humor and pop culture references.
Ayelet is the granddaughter of Rabbi Reuben Poupko of Montreal, QC and Arna Poupko Fisher of Cincinnati, OH and Rita Lourie-Galena of New York, NY and the late Dr. Harold Galena, after whom she is named after (Ayelet means deer in Hebrew).
On Tuesday, January 31, 2012, Ayelet died on Day 150 post transplant due to lung complications and lived the shortest life for 788 days.
She is buried in Baron Hirsch Cemetery in Staten Island, New York.
Through the efforts of bone marrow drives run on behalf of Ayelet, there have been 95 other life saving matches found for others, and 18 transplants performed.
Her grandfather eulogized at her funeral, “If you want to remember her correctly and pay her the highest tribute you fight for life. You fight for joy.
You choose life, as our tradition guides us. You choose joy. You choose hope and you choose optimism.”