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14

Jul

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.

Thank You,

Seth & Hindy and Akiva

Upper West Side

11

Jul

NCI: Discovery of Susceptibility Gene Leads to a Family’s New Start

“Next generation platforms for genetic studies have accelerated our progress and allowed us to identify additional DC genes in record time,” Dr. Sharon Savage said. “This family’s triumph was the result of successful exome sequencing studies. It’s truly gratifying to hear of such a success story.”

23

Jun

Family's Grief Turns to Joy After Medical Breakthrough

By 

20

Jun

After losing Ayelet, Galenas find joy with new baby, thanks to NIH breakthrough

15

Jun

Bris Speech for Akiva Max Galena - Father’s Day 2014 

Happy Father’s Day!

I wanted to thank everyone for being here, Rabbis, family, friends, co-workers, we are honored to be here to celebrate our son, Akiva Max/ Baruch Akiva, becoming an official member of the Jewish People. 

Like all Jewish events in history, the bris starts with a severe dose of pain…and ends of course with a severe dose of food. 

Welcome to the tribe.

Weirdly, I was in the bathroom before the bris and guy standing next to me asks if I am from Philadelphia. I said yes…but he doesn’t look familiar.. “From Lower Merion Synagogue?” he says. I said… yeh? who is this? “Is Rabbi Goldberg still the mohel.there?” I said, yes how did you know? 

Well, he always cuts on a slant and you happen to be peeing on my shoe!

Figure I’d start with a joke. How often do you get the chance to make a Mohel joke? 

I want to speak just briefly on the origins of our son’s name. As we all know, there is so much in a name, the arizal says ‘Shaim’ the hebrew word for ‘name’ means, “there”, “the place”- the destination - a name hopes to not just encapsulate what we call him, but what we hope he aspires to. Our hopes, and prayers, for the future. Einstein, Speilberg, Sandy Koufax were on our list, but too much pressure.

But there is another side to this, because Jews name often name children after those who came before us. Remembering our relatives, the bubbies, zaides, the pop-pops, the nanas, from our past. Those who are no longer with us, but here in spirit, but who worked, sacrificed and gave  everything, to get us to this point. It’s their personalities, and there certainly were a lot of personalities, character traits, what we hope our little man will inherit.

So a name connects the past, but also connects to the future. What was vs. what will be.

The hebrew word for Soul, Neshama, has within it the two letters, shin, mem -  Shaim - spelling name. In other words, The Soul of a person and the name are somehow inextricably linked.

So first with the hebrew “Baruch” - we are naming after Hindy’s illustrious, famous grandfather, Rabbi Baruch Aaron Poupko. The famous rabbi from Pittsburgh who aside from being a master orator and visionary, an academic and scholar, whose leadership helped shape much of modern American Orthodoxy - he actually, funny enough, is responsible for getting Heinz Ketchup to become kosher. So he has affected your life without you knowing it.

He was dedicated to showing that Judaism can not only survive but thrive in America.

 But one of the things I am in awe of is his work on Soviet Jewry. 

 As a kid we would go to rally after rally in Philadelphia and Washington DC, and for me this was the first time I personally felt the idea of Jewish Peoplehood, of Jewish identity, the fire, the fight for freedom, Jewish unity - regardless of religious level or background. Singing and hearing “We are leaving Mother Russia” still chokes me up.

Little did I know in the late 70s Rabbi Baruch Aaron from this little steel town was one of the originators of this fight. He himself was born and fled from Russia and craved nothing more than the feeling of American freedom for his brethren. He made trips to Russia, to shuls, when it wasn’t popular, and frankly, extremely dangerous. That chutzpah, that insatiable ability to say what needs to be said, to inspire, is what I want for my son. Rav Baruch spent his life making sure others knew what to care about and what to fight for. This Baruch, this blessing, is what I want to bestow on him.

 It’s no wonder why our Hindy is so special. She too fights, and has the uncanny ability to unlock things, especially for me. She takes on BDS, Iran, my laundry,  all while working tirelessly on making this baby, a reality that has taken over 2 years of work  - all because Hindy would not take no for an answer.  She like her parents and grandparents, like all Poupkos, somehow light the spark on topics and issues you didnt even know you cared about until hearing them speak about them. What a yichus. What a bracha.

I, above all, am blessed to be beside her.

The second person we named after is my Grandfather, my mother’s dad, Max Lourie, who we just called Pop Pop.

If you ever meet anymore above the age of 45 from Bayonne, NJ mention the name Max Lourie to them, and just watch their eyes light up. Sure his title for 40 years was ‘high school math teacher’ at Bayonne High School but he twilighted as the JCC Youth Group Director, tennis coach, teen tour advisor, and world traveler. He also had the ability to unlock - for him it was through unmatched gratitude and  kindness.

Pop Pop Max had a certain grace, a certain warmth and a smile - a dignity towards all people - young and old. No matter how small the deed he’d thank every waiter, bus driver, he embodied gratitude and admiration to others, -” derech eretz kadma l’torah”… Before you can be wise, you need to be kind. It’s as Pop-pop would put it, the 101 prerequisite course.

He always carried a handkerchief around because he carried his heart on his sleeve, and inevitably like my mom, has no problem telling their life stories to complete strangers. He lost his dad very early, and his mom couldn’t afford to take care of her 4 kids so they sent him away. To feel alone, to feel unwanted, unappreciated, Pop Pop’s  life was spent making sure no one else felt like that. Zeh Klal Gadol batorah. This is the greatest principal of Judiasm.

As Rabbi Poupko always says at the seder in the name of his Pop, we were once slaves, foreigners, unwanted, and our whole job of the seder is to be mindful of this and make space for others at our table, in this world. 

Pop Pop also loved sports and math more than anything. I recall my mom saying Pop-Pop leaving something in a safety deposit box for us to have when we were older. I remember thinking this is going to be amazing - what is it? Are we rich? When we finally got it, it was the scorecard he took in 1927 when he was at the ball game when Babe Ruth hit his 60th home run. Numbers & Baseball. This was his most prized possession. All for his grandkids.

He’d write letters to the NY Times Sports section weekly thanking them for their Sports of the Times and then debating every point all at once. We’d watch sports together on his TV with the sound off or just a radio on, because  if you were at the game, no one would be talking, you could just take in the experience of a ballgame.

I am so glad he got to meet Hindy so she could see first hand what a righteous person was.  My second baruch, blessing to my son, is he takes just 1/60th of the Max Lourie you are named after, and wear it proudly on your sleeve.

The final name is not connected to an ancestor but somehow captured much of our feelings, emotions that hindy and I have today, Akiva.

For for those who don’t know Rabbi Akiva he basically is the perfect Jewish Super Hero. Starting with humble beginnings, a shepard who gets inspired at age 40, through sheer hard work, he became invincible -  the master teacher and  leader of the Jewish People, whose wisdom was only matched by his kindness and mercy for others - as he famously said the most important rule of the Torah is Love your brother as you would love yourself. And Rabbi Akiba only started when he was 40 years old.

My own father would compare himself to Rabbi Akiba because he started running at age 40. When he’d ask me to run - I would always say, but dad, I’m like 20 years until Im 40. 

But as many know, Rabbi Akiva lived through tragedy, with disaster, with failure, with loss. 

The gemara tells us the story of  Rabban Gamliel, Rabbi Elazar ben Azariah, Rabbi Yehoshua and Rabbi Akiva who went to Jerusalem, after it’s destruction. When they saw the holy city Jerusalem in ruins, the temple gone, they all started crying; but somehow Rabbi Akiva started laughing. They asked “Why are you laughing?” literally foxes coming out of holy of holies stood - how are you not crying?”

And Rabbi Akiva said I laugh because there actually two prophecies, 1) that Jerusalem will be destroyed, but there is another from Zechariah  2) That young and old women and children will one day fill the streets of Jerusalem. It will be rebuilt.   But I was worried as long as the first prophecy had not been fulfilled, I feared that the second prophecy may not be fulfilled either. But now that I see the destruction has been fulfilled, it is certain that the rebuilding will be fulfilled as well.

Rabbi Akiva focused, in the midst of ultimate tragedy,on the ultimate future, on the rebuilding. The resilience to move forward.

With these words the gemara ends so poetically -  they all replied to him: “Akiva Nechamtanu, Akiva Nechamtanu”, you have consoled us! Akiva, you have consoled us”

Like Rabbi Akiva, we’ve realized, this isn’t the end of the movie, but just the The next chapter, or the sequel.

So for our Akiva, I know you are in alittle pain now, but we want you to know your big sister Ayelet will always be looking out for you. She has given us and everyone here a life affirming strength and now you have provided the ultimate comfort of knowing that our prayers, that everyone’s prayers, were not left unanswered. 

 ”Akiva Nechamtanu, Akiva Nechamtanu”

On behalf of Hindy and myself, I just want to thank everyone for being with us, now and for the past few years. You kept us standing. Our families, Poupkos, Fishers, Smiths, Joffees and Galenas for being amazing these past 2-3 weeks. You have been Non Stop.

Rabbi & Mindy Poupko for driving in last night to be here. Arna for driving here last month.

And to Hindy: Quoting Rabbi Akiva who said about his wife: “Everything I am and everything my students are, is because of you”

And special thanks to the NIH, who told us to give them 5-10 years to find the genetic mutation, and finding it in less than 2 - for making our dreams come true.

What father’s day gift. Hashem has truly blessed us.

Thank you.

 

07

Jun

It’s a boy! Mazel tov. Welcome this new special member of Ayelet Nation. 

It’s a boy! Mazel tov. Welcome this new special member of Ayelet Nation. 

25

Mar

If you find yourself in NYC on Sunday March 30, 2014 - swing by Congregation Ohab Zedek (OZ) - Annual Blood Drive in memory of Ayelet.
OZ was one of the conerstone shuls who helped get the word out about Ayelet needing a transplant in 2011 and were instrumental in setting up bone marrow drives for us. They continue their amazing efforts with this blood drive annually to remember our Ayelet.
Thank you OZ, Rabbi Allen Schwartz, and the Upper West Side Community for continuing on these acts of kindess in memory and in the name of our little Ayelet. 
Sunday, March 30th ~Congregation Ohab Zedek~ 118 West 95th Street (btw amsterdam and columbus) Time: 9:00 am- 3:00 pm Bais Medrash
If you want to volunteer or help out please contact the OZ office. 

 

If you find yourself in NYC on Sunday March 30, 2014 - swing by Congregation Ohab Zedek (OZ) - Annual Blood Drive in memory of Ayelet.

OZ was one of the conerstone shuls who helped get the word out about Ayelet needing a transplant in 2011 and were instrumental in setting up bone marrow drives for us. They continue their amazing efforts with this blood drive annually to remember our Ayelet.

Thank you OZ, Rabbi Allen Schwartz, and the Upper West Side Community for continuing on these acts of kindess in memory and in the name of our little Ayelet. 

Sunday, March 30th 
~Congregation Ohab Zedek~ 
118 West 95th Street (btw amsterdam and columbus) 
Time: 9:00 am- 3:00 pm 
Bais Medrash

If you want to volunteer or help out please contact the OZ office. 

 

17

Mar

Thanks to Aunt Yael Galena for running her first half marathon in memory of Ayelet. Always amazing to see us all somehow keep moving, gettingup, and choosing life. Thank you Yael for inspiring us all. 

Thanks to Aunt Yael Galena for running her first half marathon in memory of Ayelet. Always amazing to see us all somehow keep moving, gettingup, and choosing life. Thank you Yael for inspiring us all. 

30

Jan

January 31 - 2 Years.

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On January 31, 2012, two years ago today, Ayelet passed away. We lost our little fighter. Our sweet little ball of fun. Mrs. Miss, cowie mcow. At times it feels like two days ago.

And what we witnessed, what occurred, still seems almost shocking. Did that happen? The magnitude of the loss our child to us, still children ourselves, is quite hard to register.

Feelings get mixed up and blurred - grief and mourning, numbness then anger, and a slight sadness just visible in the way back of our eyes.  
The waves of emotions come in and out like the endless tide.  

Happy and sad memories, remembering her, as well as those who stood by our daughter, so proud, and now eek, so alone.  

She’s not there. Gone baby gone.

People often ask how we survived, and I always answer bluntly: 
We didn’t.

Or put differently, we did, but for good or bad, are not the same. Like all who experience trauma, this is our new normal. 

Too heavy for one heart to bare. Luckily, we have a world of connected strangers behind us - Ayelet Nation, you, who will not let us forget the brut force of life that was little Ayelet. You witnessed this. You felt her impact.

You heard her cry. Our cry.

And so we ask you to help us not forget the inspiration of Ayelet Yakira. Our dearest deer. 2 years after our 2 year old was returned. Taken. 

A child whose body was born broken, yet somehow she was able to make us whole. She reminded us to dig deep - we have more within us, as individuals and as a community, that we can get up when knocked way down, we can go another final round.   

She’d want us to get up, to live more vividly. Like in the flick Rocky ‘Get up you son of a bitch ‘cause Mickey loves you’. (I replace Mickey with Ayelet.)   Take action and choose to give it your all. Ayelet reminded us that we all have a superhero uniform underneath our regular everyday garb, just waiting to be unleashed.  She ripped off the regular.

So if you have a moment today please shed a tear, a prayer, a thought, a wish to remember the little girl who loved nothing more than a day of stickers, straws and smiles. She, I am sure is smirking down on us, getting a kick out of just how much her story, her past, is still so very present in our lives. 

Let the unstoppable tears of two years ago, drive us to become unstoppable human beings.  

If you use the hashtag #MissingAyelet it will add your message to the Ayelet Mosiac here:

Remebering Ayelet Mosiac:

http://apps.hyperactivate.com/games/preview_new/52eacde17faad?width=800&height=805

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22

Dec

Learning about life while experiencing death

Some nice quotes about Ayelet Nation….”It’s all about what these kids teach us about life.”http://www.timesofisrael.com/parents-who-blog-about-their-terminally-ill-children/

12

Nov

The Forward 50: The Girl Who Broke Your Heart - A Year Later...

03

Nov

Ayele’ts uncle Isaac Galena is running the New York City Marathon today in memory of our dearest deer, little Ayelet.

As they say at siyums, ‘Anu Ratzim, V;haim Ratzim’ in this case seems most are running for good causes. Give him strength and stamina Ayelet!

If you are in the New York City area, come out to cheer him on! We will be at 96 and 1st at around 2pm and then at 96th and 5th at around 3PM.

 Go Isaac Go! 

29

Sep

Since we were in town (Cincinnati) for the holiday, we went back to Cincinnati Children’s Hospital for the first time since her passing. Nearly 1.5 years later. 

We were pretty prepared emotionally, that is, until the nurse who greeted us was the very nurse who shaved Ayelet’s head when her hair began to fall out. Tears. Then so many familiar nurses faces greeted us through the halls.  

The reason we went back is - through the generous donations to the hospital in her memory, a photo exhibit was setup throughout the transplant floor of photos of kids who have gone through transplant, as a way to give those going through it - hope.One of the nurses is actually the photographer as well. Pretty powerful to see. 

Ayelet’s photo is also there, in front of her old room, with a choice quote “Though she be but little, she is fierce”.

28

May

By the Sea' was a a song that Grandma Rita sang to Ayelet whenever she saw her. It was their special song, and upon hearing it, on a phone call or in person, Ayelet would instantly light up.

So when grandma Rita wanted to do something in memory of Ayelet at the Atlantic City, her summer place that Ayelet had been to many times, the C-sure playgound, a playground made specifically for kids with special needs, seemed like the perfect fit.

A playground for kids literally, By the Sea. 

So to kick off the summer, this Memorial day weekend the galena/poupko family and their extended Atlantic City/Lower Merion community came out to christen the newly dedicated slide, and took a moment to remember the special little girl who lit up the summers for all of us.

If you are in the AC/Ventnor/Margate area,  By the Sea, swing by and take a slide down memory lane with and for Ayelet. 

One word of caution: if you hear this song, it will be stuck in your head for years. 

29

Apr

Sunday May 12th 11-3PM
 Buy a cupcake, get swabbed in memory of Ayelet. Thanks to JCC in Manhattan 20’s + 30’s Alisa W Gift of Life Genna SingerSign up on Facebook and ask yourself if you know someone not swabbe:https://www.facebook.com/events/457955330957381/?ref=br_tf

Sunday May 12th 11-3PM

Buy a cupcake, get swabbed in memory of Ayelet. Thanks to JCC in Manhattan 20’s + 30’s Alisa W Gift of Life Genna Singer
Sign up on Facebook and ask yourself if you know someone not swabbe:https://www.facebook.com/events/457955330957381/?ref=br_tf