Hindy & Seth gave out two Ayelet Courage Awards to Ezra Fineman and Dylan Rabinovich….here is the portion of the transcript from last night’s magical night:
NY1 Reported on it today: http://www.ny1.com/content/top_stories/172551/hope-for-perfect-match-shines-at—gift-of-life—gala
Thank you Kelly, were so honored that you could be here tonight, I feel like saying, xoxo, but I wont.
Good evening everyone, were so moved to be here with all of you and thankful to be able to honor our daughter Ayelet in this way.
Everyone in this room represents what we have come to all, “Ayelet Nation,” friends, family, and people we never met who came together to support us and Ayelet these past few years. Tonight’s event serves as testimony to the incredible people who stepped up when we were fighting for Ayelet’s life and who continue to be there to ensure that Ayelet and her story will never be forgotten. While, there will always be a hole in our hearts, all of you in this room have helped, each in your own way, to bring us comfort.
Jessica, you are the force tonight’s event. You have modeled for all of us what it means to commit to cause and see it through. Look what you’ve done and how many lives you have already saved. Words will never adequately express our gratitude to us for bringing Ayelet to life tonight.
Who was this pint sized 14lb ball of fun named Ayelet – a name most can barely pronounce? It’s my job to introduce you to her, to those who didn’t follow her, or for those who did. To bring her to life tonight at this very special event.
So meet Ayelet.
First - Ayelet’s personality was revealed most when we got to the hospital for the transplant. Ayelet couldn’t talk, barely crawl, but she was absolutely clear about what she wanted. So many odds going against her, still her hard nosed Poupko personality shown almost too visibilly though. Pass me my blankie. Snuggle with me so tight. We’d walk out - Don’t leave. Hindy and I still sometimes don’t talk and communicate better like ayelet. I’d put on a whole show making jokes or sing songs at 2AM and she would just look up smirk and go back to her work. A brut. An angry bird. A fighter. She was growing up in the hospital before our eyes. Her, albeit high maintenance, personality came to life.
She also somehow got extremely creative. Medical bottles became fun, removing caps and stickers off them. She’d spend half a day peeling stickers and posting them to the hospital wall, and the next half of the day removing them. She’d take every hospital straw and unpeel them. So entertaining. Even today I still steal straws from 7/11 for her. Her absolute creative ability to entertain came to life.
And for me, when my yarmulke fell off she would quickly pickup up and put it on my head. She reminded me of who I was, my purpose, my responsibility on this planet. Are we fighting like she is, who with nothing was able to give us a sense of everything?
Admit it, it was thrilling. I look back and while this may sound strange, those months in the hospital were my happiest of my entire life. I had a higher sense of vitality than any time before. And for you, was there anything more thrilling that reading the ups and downs of Ayelet on the blog? Every morning update mattered. Living for months in the bottom of the ninth. The goalline in the superbowl. And Ayelet would just smirk and go back to her stickers, be herself.
Why? Why did readers gravitate to this little shaved head wonderfully dressed ball of life? Ayelet reminds us that real life is a gift, a gift, with ups and downs and tears and laughs and complexities. But it’s our job to live it. And we need to be a brut, be Rocky, be an angry bird be giving because this is all that matters.
You know I sometimes cry about Ayelet. And with this I’ll close, but it’s never ever out of sadness, or feeling bad about myself. It’s tears of pride.
To be so so proud of our brave daughter. Proud how damn tough she was, proud how she made us live, reawakening a sense of purpose in us, of courage, strength and bravery that I did not know any of us had.
Proud of our friends & coworkers who got up and fought like Ayelet was their own child. Now, this is real community! Tears of pride poured when her story was listed as the 50 most impactful of the year. Over 50 matches – has a parent ever been so proud?
And crying out of pride and joy for events like this, that were created out of nothing. If this broken little 2 yr old could fight for life, give her everything, that why cant we live like this? We have this experience and we need to carry it, carry her, with us for the rest of our lives. And when we get down or feel helpless - because it is hard, think about this little soul that was able to move mountains, can you hear her? As her name goes - I don’t say it – I YELL IT. All of our souls are screaming for it, we need it, and I know all of us can do it. Thank you.
Now, Ayelet didn’t have many friends as we had to keep her away from those germy two year olds…but one friend she did have was our first award winner.
While Ezra and Ayelet never met, we often imagined them being best of friends and even joked about them getting married one day. Ezra sent germ-free drawings to Ayelet in the hospital and Seth and I had the privilege of getting to know Ezra’s parents, Robin and Evan, as they embarked on the difficult path of finding a match for Ezra.
Ezra needed a match to cure his rare primary immune system disorder called Hyper IgM Syndrome, which prevents his body from producing antibodies to fight infection. With a faulty immune system, Ezra has been unable to enjoy normal childhood activities like preschool, birthday parties, and playdates.
As no suitable bone marrow donor was found in Ezra’s family or in the worldwide registries, Robin and Evan contacted Gift of Life to help them find a match for Ezra. Bone marrow drives were held throughout the country and the world with the hopes of finding him a perfect match and after 2 years of searching, these drives led to over 4,500 potential donors and matches for nearly 60 other patients in need.
As no bone marrow match for Ezra was found, his parents made the difficult decision to move forward with a riskier transplant using a mismatched cord blood unit and the transplant took place this past May. Ezra continues his recovery at home and in isolation. It is currently unclear whether Ezra’s transplant is taking and whether he will be cured. Despite these difficult circumstances, he continues to amaze the watchful doctors and nurses with his spirit, enthusiasm for life and his love of basketball, music and space shuttles.
Seth and I went to visit Ezra at Sloan Kettering during the transplant and we brought him this really cheap golf set and we were just amazed at how much energy he had considering how weak his little body was.
We are all hopeful that Ezra’s donor cells will do what they need to do and that Ezra can live of life free of needles and doctors.
Nothing brings us greater joy than to present little Ezra, through his parents Robin and Ezra, with the Ayelet Galena Courage award, “In recognition of your incomparable courage, incredible resiliency and loving and infectious spirit!”
Robin and Evan, please come to the podium and accept this award on behalf of Ezra.
Shortly after Dylan Rabinovich was born, he was moved to the NICU because he was jaundice and suffering from what doctors call, “failure to thrive.” In time, his parents learned Dylan has a very rare and severe genetic disorder called Emanuel Syndrome. Instead of having 46 chromosomes, he has 47.
Dylan’s life has been a whirlwind of doctors, many hospital stays and hundreds of tests. Emanuel Syndrome is so rare that only about five children are born with it each year around the world. In addition to Emanuel Syndrome, Dylan has a host of other medical problems and his parents were told Dylan would not live to see his first birthday, but he has defied the odds. This December, Dylan will turn 7.
It just so happened that Dylan and Ayelet were one floor away from each other when Dylan underwent lifesaving surgery at Cincinnati Children’s Hospital.
Dylan is a living inspiration to us all. He teaches us to never take no for answer and to not live your life by anyone else’s expectations but your own.
Dylan’s courage to face the many complications and difficulties of his life is truly humbling.
We are so honored to be able to recognize Dylan’s courage tonight and present him and his parents, Melissa and Oleg, with the Ayelet Galena Courage Award, “In recognition of your bravery, fight for life, resilience and for being a very charming young flirt!