Our lives really were online. We had detailed our daughter’s battle with a rare genetic disease and a bone marrow transplant and somehow the Jewish people were captured by our daughter’s fight for life, and crushed by our heartbreaking loss of her death. Over 60,000 people were following our daughter’s ups and downs as we tried to survive in Cincinnati’s Children’s Hospital as observant Jews, as young first-time parents, as self-made medical experts for our Ayelet. After eight months, Ayelet got an infection she didn’t have an immune system to fight and sadly, didn’t make it.
We returned home childless, lifeless, lost.
We waited outside the locked basement office of Bonei Olam and saw a young Chassidish man with a short beard and bekesha approach and quickly open the door and invite us in. He had a warm smile, and I think he could tell we were way out of our element.
Our initial thoughts as we answered his very basic questions were that we would be giving him an education on our daughter’s story, her genetics, and her 800 page medical history. After all, our experiences had made us virtual doctors. But it was exactly the opposite.
The more we talked, the more Chaim’s brilliance radiated. He somehow knew our daughter’s genetic makeup, her history, where the specific mutation was found in her DNA, and all the doctors, researchers and players we had been in consult with every day of our lives over the past three years. And we were just one of the 80 cases he was working on. His knowledge unraveled layers and layers like the payos corked behind his ears.
I don’t know what we talked about over the course of those next three hours but it somehow was one of those epic conversations that cover everything in this universe that mattered. Love, loss, religion, education, Klal Yisroel, the challenges, and the realistic steps we’ll need to take to our holy grail of consolation: a future child.
There was a world built in that one meeting. A Bonei Olam. We felt there was hope again.
Over the course of the next year, Bonei Olam would generously help fund and support the extremely costly and long, exhausting process of Pre-implantation Diagnosis, and In Vitro Fertilization. These words sound complex and they were at first, but this is where Bonei Olam really helped us. At every step, Chaim would tell us which doctor to call, what lab to use, what to ask, what it means.
Chaim’s curiosity also decided in that conversation that Ayelet’s disease was remarkably un-researched that he would like to further study our daughter’s disease, perhaps there was something more to it. He called us months later, as he continuously guided us through the world of PGD, and IVF to tell us he had finished an academic research paper about our Ayelet’s disease – and proved it should be added to the Ashkenazic genetic panel. In other words, Ayelet’s DNA, her life, with Chaim’s research, will potentially save countless lives in the future.
Bonei Olam somehow finds ways to give to the young couple in search of hope and the larger Jewish people of the future, in new and innovative ways that are unmatched on this planet.
As we hold our son Baruch Akiva in our arms, our blessing, that there are many worlds like ours, that need your help to begin to hope again. To begin to dream again, To begin to smile again.
You don’t know how many people need your help. Bonei Olam is taking each of these couples by the hand, walking beside them, and together we as a people are continuing to walk, to create, in the ways of Hashem.
Thank You,
Seth & Hindy and Akiva
Please join us and show your support for the Bergen County for Bonei Olam event on Sunday March 20th, 2016 at Keter Torah 600 Roemer Ave Teaneck NJ. Learn more at http://www.boneiolam.org/.
By Seth and Hindy (Poupko) Galena
