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Carrying On Ayelet's Fight For Life

Posted: 02/ 2/2012 2:00 pm

Even at the moment when Ayelet Galena could no longer fight the disease that ravaged her little body, the 2-year-old was still saving lives.

Throughout Ayelet's one-year battle against dyskeratosis congenita, a rare bone marrow disorder, her fearless parents invited the world to join their crusade -- and thousands showed up. With every poke and prod, intubation and extubation, every medical victory and setback, Ayelet's parents posted photos and updates with the kind of humor, honesty and unconditional love that galvanized thousands of supporters to quickly get involved.

Her 5,769 Facebook fans, some family and friends of the Manhattan family, others -- complete strangers -- got swabbed for blood marrow donor drives, and laced up for fundraising walks. They sported "Eyes On Ayelet" T-shirts, baked challah weekly in her honor, and included her in their daily prayers.



And when Ayelet tragically passed away at 5 a.m. Monday, in the arms of her parents who soothed her to take a "schluff," the baby who was never able to walk or talk, died having had a hand in saving 21 lives. Twenty-one people in need of lifesaving bone marrow matches found theirs through Gift of Life drives in Ayelet's honor.

As Ayelet's mom stood before a synagogue packed with hundreds of people on Tuesday morning, she wondered what it was about her daughter's story that so many people found compelling. Each day, 14,000 people searched her name. Big-name celebrities, like 50 cent and Leighton Meester were so moved that they tweeted for her cause. An innumerable amount of posts on Ayelet's Facebook wall begin with, "I've never met you..."

Her dad often blogged about the "Ayelet Nation," and that's what this community was. Thousands of people clung to the family's every update, the photos of the cute girl with puffy cheeks who had her "NFL game face on." The calls for prayer for their "little pisher" to get a urinating miracle. The pictures of mother and daughter sharing a moment, face masks on.

Ayelet wasn't like most 2 year olds, and it wasn't just her life threatening disease that made her different.

Ayelet spent most of her too-short life in pain, but she rarely cried. When visitors came to the hospital, Ayelet nudged them to not only take off their coats, but to also hang them up.

It was her way of knowing that they were there to stay.

Ayelet's dad marveled at the way that his resilient daughter turned her "hospital hell" into a playground. She peeled stickers off medicine bottles and found so much joy in unwrapping straws that her dad bought a batch of 5,000 to play with on her second birthday.

Ayelet's grandfather remarked in his eulogy of the absence of words to describe the tragedy of his granddaughter's death. There's a term for a child who loses his parents, a husband who loses a wife. There is no word in the English language to describe what it is for a parent to lose a child.

There are no words to describe this tragedy, but Ayelet's life was rife with color and purpose in her two short years. Her grandfather urged each person to take away the essence of what this baby girl was here to teach.

Fight for joy. Fight for hope. Fight for life.

To continue Ayelet's fight, consider making a donation to the Gift of Life Bone Marrow Foundation or becoming a bone marrow donor in her honor. Learn more here.

 
 
 
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11:16 AM on 02/03/2012
Ayelet has touched people from all over the world....like u say - it wasnt just her disease that made her different and all of us glued to FB for updates-- but the message in her eyes, the strength that she radiated from her little body, her beautiful face, her peacefulness--and all that taken from photos that her parents so proudly shared with the world. They were not sharing her pain they were sharing her strength, their faith and everything that we stand for as a people - Unity! i pray that it should not take the life of a little angel to bring us closer as a community. Ayelet , without knowing you, We love you! you have been a shining light to all of us. The pain we felt when u left us can only be described as the same pain felt when loosing one close to us - u were close to us..Beautiful Baby girl your memory lives on forever! May Hashem and his angels be taking care of you and may you continue to watch over us and give us the strength to continue in this unity you created! Shabbat Shalom Little one, shabbat shalom xx
12:37 AM on 02/03/2012
I cannot stop thinking about Ayelet and the incredible strength of her family during such a tragic time. I hope and pray the loving and blessed memory of this one little soul who brought so much to the world in such a short time, is bringing them SO much peace and comfort right now. Her neshama should have an aliyah (her soul should ascend higher and higher in heaven) b/c the enormous impact she made here and continues to make in this world.
03:26 PM on 02/02/2012
It really has been breathtaking watching everyone mobilize around Ayelet... and her parents have been a source of inspiration... I hope that gives them comfort at the very least... Thanks for spreading her story further, Eleanor.