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A Twelve-Year Journey – By Akiva Zablocki

IMG_0460Twelve years ago today, I took a leap of faith into the abyss. Despite over 30 experts telling me that my brain tumor was “inoperable” and any surgeon that tries to remove it will most likely kill me, I decided to fly to Arizona and trust that Dr. Spetzler could save my life. Over the years I have always pondered how lucky I am to have lived. Truth is, it was not luck at all. I had spent months becoming an empowered patient while my tumor grew and pressed on the cranial nerves in my brainstem.  Together with my family and close friends, I contacted dozens of doctors and experts and read countless articles about brain tumors. I made an informed decision to ignore my NY medical team and trust a larger-than-life neurosurgeon in Arizona because I truly believed, after all our research, that he could do what he said he could do.

My journey then was mine alone. It is easier to make life-risking decisions like I needed to make when you are 25, single, and have no other choices. My family and friends were with me, but I set out on this journey on my own and my decisions only directly affected myself.

From the day I sat recovering in my hospital room, thinking about how I made my decision and was given a second chance at life, I knew that I would focus my life on helping others to become empowered patients. I truly believe that the communities I joined and the endless opinions I sought out allowed me to make and maximize the health care decisions I needed to make.

Amanda always tells me that I had my brain tumor experience as training for our son’s medical journey. In some ways, it is true. Unbeknownst to Amanda, she carried the CD40 Ligand Deficiency gene, and, regardless of who she married, her sons would have a 50-50 chance of being born with Hyper IgM Syndrome, a life-threatening and severe immune deficiency. In 2005, I lived, to find Amanda and fall in love, to be the father of Idan, to use my past experience in order to maximize our health care decisions to find him a cure. Call it fate, call it destiny, call it a series of unfortunate events, or, perhaps, call it the most fortunate of events. The journey I set in motion, the day I leaped off the cliff back on November 8th, 2005, led us to the point we are today.

Idan, our son, is doing great. The decisions Amanda and I made for him over the last four years have resulted in a true shot at a long and healthy life for our son – something we dared only dream about when he was first diagnosed. After learning all we could about Hyper IgM syndrome, we decided to travel across the country to Seattle in search of a cure for Idan. This time around we journeyed together, and our decisions were made for our son. We called upon a wide community of friends, family, and strangers, to help us along this journey with the hope to save our son. Inspired by Idan, and the amazing following his journey created, we spent the last four years working tirelessly to empower other patients and families to make the best decision they could when dealing with Hyper IgM Syndrome.

My work is far from being over. I may have been cured of my brain tumor, and Idan may be on his way to a cure from his Hyper IgM Syndrome, but so many others are in need of a cure. My wish is that you will help me continue the journey of patient empowerment.

On November 28th, Giving Tuesday, I will be calling again on all my friends to help us find a better cure for Hyper IgM Syndrome. Twelve years later my purpose is clearer than ever, and my journey is just beginning. Will you join me?

Idan’s First Day of School – Over the Rainbow

Idan first day.Since Idan was first born, one of our nightly routines has been to sing “Somewhere Over the Rainbow.” This song took on new meaning when Idan was first diagnosed. What began as a soothing lullaby became a nightly plea. “Some days I wish upon a star, I’ll wake up where the clouds are far behind me…” building up to the crescendo, “if happy little blue birds fly beyond the rainbow, why, then oh why, can’t I?” There were nights when I couldn’t bring myself to finish the song, my voice cracking on the line “somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true.” Nights when Idan’s voice rang out loud, echoing my call for better days, yearning to soar above the rainbow after so many cloudy nights.

Today, we flew right over that rainbow, and the dreams we dared to dream really did come true.

Today, Idan had his first day of Kindergarten. Today, Idan had his first day of participating in the most normal and routine activity that all other kids his age get to experience. Idan had been very worried and afraid of this new experience. It’s no wonder, as he spent most of his life in isolation, avoiding other kids at any cost. We spent the summer getting him used to other kids and the world around him. Robofun camp, soccer, and play dates all helped, but we still were not sure he was ready. When Akiva picked him up after school today, Idan was all smiles. He had an amazing first day and enjoyed all the new activities. He was even excited to join the other kids and parents for an after school playground meet-up. It was drizzling out, and Idan definitely still has a hard time physically keeping up with kids his age on the Jungle Gym, but he did not want to leave, and stayed and played till everyone was ready to go home.

He may have landed in Oz today, way over the rainbow into Munchkin Land, but it looks like he is finally fitting in.

 

 

 

My Birthday Wish for Idan!

IMG_0292Idan, today you turn 5 years old – a milestone in any child’s life, but even more significant for you. When you were born, your mother and I named you Idan, which in Hebrew means Era, or a distinct and noteworthy period of time. It is first mentioned in the Old Testament’s Book of Daniel as marking the end of a generation and period in time. In your naming ceremony, I explained that we saw the birth of our first child as a new distinct era in our lives. Until you arrived, our lives had been marked by a series of journeys. I literally journeyed across the world from Israel to New York to meet your mother. During that era, I had a perilous journey with a brain tumor, with a miraculous, against-all-odds survival and recovery. We connected your first name, Idan, to your middle name, Jordan. I explained that at the end of the Israelites’ 40 years journey in the desert, and before they entered Israel to start a new “era” in their homeland, they had to cross over the Jordan River. In the literature, water and the emergence from water represent rebirth. For us, this literally meant birth, as we welcomed you, Idan, into our family, and the three of us began our new journey together.
Little did we know that we would be setting out on the most challenging journey of our lives, one more perilous than brainstem surgery or anything we could have ever imagined. The journey was long, and like your ancestors, 40 years desert journey, filled with ups and downs, dangers and triumphs, losing hope and finding it again. Throughout this journey, the one thing that helped your parents continue on was your perseverance.

FullSizeRender 5Throughout the many long hospitals stays, the multiple surgeries, the thousands of needle pokes, the hundreds of medication doses, the days of chemotherapy, it was your perseverance that carried us through. Your smile, your joy, and your endless curiosity helped your parents get through the tough days. At the young age of 4, you already explained to your mother how all the pain of the transplant would all be worth it in the end, as you would finally be able to make friends the following year and play with other kids. You were so focused on this goal, that you could withstand the terrible side-effects of the chemotherapy on your little body and knew that it would just be one period in your life, an era in and of itself.

Today you turn five Idan, and my wish for you is to never lose that perseverance, curiosity and positive outlook. Yesterday, we marked the one-year anniversary of your transplant. And today, just like you predicted last year, you are spending this morning playing with friends in Lego/Robotics camp – no chemo, no IV’s, no needles, no doctors, no pain – just good old-fashioned fun. Let this be the beginning of a new era in your life – where your existence is not defined by the trauma you have had to overcome, but by the experiences you will collect that expose you to the joy and wonder of this incredible world. You have journeyed long and far to get to this point. May your perseverance, curiosity and positive outlook continue to guide you, but this time through great adventures, meaningful friendships, and fun – so much fun. And may these traits keep you steady on this new path, even as your new immune system is tested and faces the inevitable set-backs and challenges that are down the road. Today might be the end of one era, but it is the beginning of a new one as we return “home” to the life we had planned for you when we named you Idan.

We love you Idan, and wish you only positive and enlightening journeys from this day on.

Day 365 – Happy Transplantversary to Idan!

Screen Shot 2017-07-11 at 4.04.21 PMOn this day last year, we were anxiously watching a little IV bag with donor stem cells slowly being drained, wondering if it would bring the cure we so desperately needed for our little boy. It has been quite the journey ever since. Through ups and downs, we never lose sight of how fortunate we are to have made it to each important milestone, but the one-year mark is by far the most significant. If you survive a year after a bone marrow transplant with no major complications, your chances of survival long term (absent rejection, of course) are excellent. Wishing our little Idan a very happy “Transplantversary” today, and spreading some love and joy through this video in hopes of helping other little boys with his disease reach the one-year mark with as much courage, grace, strength, and hope as Idan had during the long but incredible year.

You’ll want to watch this one with sound (please like and share!!!) 🙂 Exactly one year ago, Idan had his second bone marrow transplant to cure his Hyper IgM. Please join us in wishing Idan a very happy Transplantversary!

We are hoping to break last year’s record of over 19,000 views & nearly 600 shares in honor of Idan’s Transplantversary and in support of the Hyper IgM Foundation, which is working tirelessly to improve the lives and long term outlook of children with Hyper IgM. You can help! Like and Share this video, and please consider making a donation to the Hyper IgM Foundation on our website at www.hyperigm.org/donate, or right here on Facebook: https://goo.gl/7iTC1q. Thank you!!

Day 347: Almost one year

Somehow, despite all odds, here we are with a healthy happy child on his way to kindergarten. We are still waiting to see whether Idan is cured, but his immune system is showing us very positive signs that it is ready to be put to the test. This summer, we begin a slew of procedures and tests as part of Idan’s one-year follow up. We started this process on Friday – right where it all began.  
It felt a bit unreal to be speaking to the very same physician who first spoke to us in the ER, when I was cradling my weak and breathless baby, feeling what I can only describe as rage. That feeling you get when the world buzzes around you like a tornado, threatening to take everything – everyone – you hold dear in an instant. Dr. Worgall came down to see us after reviewing Idan’s chart. He pulled a chair and sat directly in front of us, and began speaking slowly and carefully, reading the rage (fear) on our faces. He told us that Idan was breathing far more rapidly than his little body could handle, and if we didn’t get to the bottom of this, his lungs would eventually tire out and simply give up. He admitted he did not know why Idan was so sick, but told us that, “common things being common,” he would look for the things that are common, and although there was a long list of potential other causes, he did not want to speculate that the cause was something more rare unless he had a reason to. Shortly after that conversation, because of the severity of Idan’s clinical symptoms, we were taken to the pediatric ICU.  
As Idan’s breathing deteriorated over the next 48 hours, the intervention necessary to support his lungs intensified. Dr. Worgall was worried there might be some bleeding in the lungs, and recommended we do a bronchial lavage, a procedure requiring intubation. When the procedure was over, the ventilator became a permanent fixture in Idan’s airway until his underlying condition could be sufficiently treated and his lungs regain their strength. When the results from the lavage came back, Dr. Worgall and the PICU attending told us that Idan had PCP, a rare pneumonia with a 50% survival rate. Now that we had a diagnosis, we could treat it, and increase Idan’s chance of survival. To this day, we believe Dr. Worgall was instrumental in keeping our son alive.  
It had been over 4 years since we had seen Dr. Worgall, but when we saw him yesterday, we greeted him as old friends. It’s amazing the bonds you make along a journey such as ours. Dr. Worgall’s face lit up with joy at seeing a grown Idan, healthy and strong. He told us that he often speaks to his students about Idan and our family – from the difficult diagnosis, to the arguments with the residents and PICU team when things seemed to be spiraling for our baby boy in the first couple days after arriving in the ER. The experience was almost as memorable for him as it was for us. 
While a reminder of a painful time, the visit reinforced how far we have all come from that day in the ER. Idan is a healthy boy, despite having had two stem cell transplants and nearly dying from pneumonia. And we formed the Hyper IgM Foundation, which has already had a positive effect. The Foundation recently gave a grant to a promising study on gene editing for Hyper IgM, and has reached 150 families, often in remote locations, giving them comfort and a vibrant and close community. Importantly, the Foundation is now a powerful and recognizable voice in the medical community – an active participant in the dialogue about how to better diagnose, treat and cure Hyper IgM. 
A couple weeks ago, we found ourselves at the Immune Deficiency Foundation’s conference in Disneyland. Idan met other kids and families with Hyper IgM, including a little boy his age. Having just received clearance from the doctors to go swimming and be in crowds (for the first time since his diagnosis after that hospital stay four years ago!), we made sure to make the most of it. Idan splashed in the pool, rode the rides at Disneyland, and played with other kids without fear. And, for another first, Idan skipped his weekly dose of subcutaneous IgG. It was the first entire week in our collective memories that Idan was entirely free of needle pokes. 
And Akiva spent his first Father’s Day ever without worry over Idan’s future, without fear, without restraint. 
In the next few weeks, we will be raising funds to support the Hyper IgM Foundation in honor of Idan’s transplantversary, and hope you will join us in ensuring that others living with Hyper IgM have as bright of a future as our little Idan. 
To donate today please visit: www.crowdrise.com/idans-journey-to-a-cure/fundraiser/hyperigmfoundation

Idan’s 1st Transplantversary

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It has been over four years since our son, Idan, was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency, and an army of supporters came together to support our family as we headed into a bone marrow transplant to cure our little boy. Two transplants later and a long journey with many hospital stays, a cure appears to be within our reach. Idan is doing amazing and will be going to kindergarten this fall. In July, we will celebrate not only Idan’s fifth birthday but also his first Transplant Anniversary, or  “Transplantversary” – a great achievement for any transplant patient, but especially for Idan, given the failure of his first transplant.  Our journey is not over, but we rejoice and celebrate this milestone and give thanks to all of you who have walked this road with us. So many other children with Hyper IgM have been less fortunate, whether with transplant outcomes or without having a donor match to even journey down the road for a cure. The Hyper IgM Foundation, which we founded, is working tirelessly to support these families and to help find a cure for all children and adults living with Hyper IgM Syndrome.

13697129_1332607503435880_8894533746877192939_nLast year Idan’s army helped raise over $19,000 in support of the Foundation and the research grants we provide. The Foundation is helping to fund cutting-edge gene editing research that will hopefully provide a safe and long lasting cure for Hyper IgM Syndrome. Today, we ask you to help us bring this future closer and make a donation in honor of Idan’s One Year Transplantversary.

Our goal is to raise over $25,000 this summer in honor of Idan’s cure and in support of the Hyper IgM Foundation. This will allow the foundation to increase its research grants to the labs focused on gene therapy and accelerate a cure.

Three ways you can donate:

 

Other ways to support the cure:

Help us spread the word! Pass this email along, or share our Facebook fundraiser. Start a fundraising page through Crowdrise or Facebook and set your own goal in honor of Idan or another HIGM family.

HyperIgm

More about the Hyper IgM Foundation:

The Hyper IgM Foundation aims to improve outcomes and quality of life for Hyper IgM patients and their families through promoting and supporting research, creating and providing educational tools for the patient and physician communities, and creating a community to support Hyper IgM patients and their families as they undergo treatment and cope with this disease. Between Akiva’s extensive experience in public health, Amanda’s legal background in healthcare and nonprofit law, our fellow board member Dr. David Hagin’s cutting-edge research into gene editing for Hyper IgM, and our scientific advisory committee that consists of the foremost experts on Hyper IgM in the world, we are confident that we can make a tremendous impact.

We hope you can join us again in support of a cause that will impact the lives of many children and adults living with HIGM.

Consider a donation today!

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The Hyper IgM Foundation is a recognized 501(c)(3) charity and all donations are tax deductible. We thank you for your support and invite you to stay up-to-date on the Foundation’s efforts by connecting with us on Facebook by liking the Hyper IgM Foundation Facebook page, www.FB.com/HyperIgMFoundation, and by visiting our website, www.hyperigm.org.

As a reminder, the Hyper IgM Foundation is entirely a volunteer-run organization. We have no salaries, no rent, and limited overhead. This means that 100% of your donation goes to fulfill our mission to improve the treatment, quality of life and the long term outlook for children and adults living with Hyper IGM Syndrome through research, support, education, and advocacy.

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