Thanks Bonei Olam
This is a letter written in support of a Jewish organization called Bonei Olam, who generously provided us with financial assistance and guidance through the entire PGD and IVF process for Akiva Max. This organization has been secretly helping so many young couples with a range of fertility challenges - and will be more and more essential in the coming years as there are more and more innovations within fertility/infertility world. They helped us greatly. Please support if possible. They are awesome.
Read at the Bonei Olam Fundraiser, Summer 2014, Long Island NY:
Getting off the subway that early Sunday in middle of nowhere Brooklyn we felt as lost as we had been for the past year since our daughter Ayelet passed away. The grey, concrete streets felt the same, but wider, and more frequent yarmulkes and sheitels quickly passed, exchanging stares, but it was foreign from our Upper West Side alcove that we rarely left unless it was for a vacation or a Rosh Hashanah, Pesach exodus. Brooklyn was something we talked about, read about in the nytimes, and referenced it as if knew all about hipsters and yeshivish flatbush, and restaurants, but rarely if ever experienced it together.
The director of Bonei Olam, who we had been connected to via friends a few weeks prior, said he really would like to meet us in person. “Why did we have to meet in person? What does Bonei Olam do anyway?” I’d whine to Hindy as we tried to find our bearings in non-number and now alphabetical streets. “Can’t we just email all our details? I mean our entire life story is online, what more does he need?”
Our lives were online. We had detailed our daughter’s battle with a rare genetic disease, a bone marrow transplant and somehow, the Jewish people were captured by our daughters fight for life, and crushed by our heartbreaking loss of her death. Over 60,000 people were following our daughter’s up 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 8 months Ayelet got an infection she didn’t have an immune system to fight and sadly, didn’t make it.
We returned childless, lifeless, lost.
“The director just wants to meet us”. I could hear she was somewhat unsure as well. We found a cute kosher cafe, ordered greek salads, thick muffiins and warm soups and then rushed to pay so we could get this ‘meet and greet’ over with.
Getting dressed up and traveling below 72nd st. on a sunday was not our thing. 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. We thanked him for letting us in and impatiently asked if Rabbi Jalas will be coming soon? He said, I am Chaim. You were expecting someone else? We laughed.
Our initial thoughts as we answered his very basic questions were this would be us giving him an education on our daughter’s story, her genetics, her 800 page medical history. 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, all the doctors,researchers and players we had been in consult with every day of our lives over the past 3 years. And we were just one of the 80 cases he was working on. His knowledge unraveled layers and layers like the payis corked behind his ears.
I dont 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.
We were dazed and confused as we got up to leave. We both walked out of the small basement office and our eyes were opened - it was a new vibrant Brooklyn, the grey was gone - we finally somehow found a human on this planet who understood where we were. What we had been through and what needed to do to get things done.
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 Preimplantation Diagnosis, and Invitro 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.
What to expect when you are, trying to get to, expecting.
This guidance was more priceless than the support because it showed us a practical path to not feeling helpless. To feel empowered, like we had an inside connection to research labs, clinics,. “Chaim told me about you…” was how most new appointments started. His advice was priceless. His name is golden, and his personal care for every step with us was inspiring.
Chaim’s curiosity also decided in that conversation that Ayelet’s disease was so unresearched 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 is unmatched on this planet.
I dont know if we’ll ever go back deep into Brooklyn, but I do know, as we hold our new son Baruch Akiva in our arms, our blessing, who was born just a few weeks ago, 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.
“Those who sow in tears, will reap in joy” - In this world of fertility, there are far too many tears, mostly hidden and not enough joy - but things change in the blink of an eye. Bonei Olam is opening up our community to change and we hope that you can continue to support these builders, in their efforts one family at a time. 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.
With endless gratitude and appreciation to all who are here tonight and to Bonei Olam, keep on building - as you have done for our family, our future.
Seth & Hindy and Akiva
Upper West Side