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Happy 3rd Transplantversary to our son, Idan!!

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We are always amazed and overcome with joy to see how far you have come in three short years. Three years ago we sat with you in an isolated hospital room on the transplant floor of Seattle’s Children’s hospital and watched as your donor stem cells slowly transfused into your blood system. We hoped and prayed that these magical cells would find their way to your bone marrow and set up a permanent home there. For the second time in your short life, we put you through several months of hell, starting with a painful surgery to place a central line and a week of high dose chemotherapy and immune suppressants to make room in your bone marrow for those magical donors cells.

While the chemotherapy made you weak and fragile-looking, you never lost your spirit and optimistic outlook on life. At just 4 years of age, you told us that you understood why you needed to go through so much pain and suffering, you explained to us, your parents, that it is all going to be worth it someday. Because you will be able to make friends with actual children your age (not the stuffies we called friends) and be able to enjoy the outdoors and school just like any boy your age. You knew better than us, that someday you would be ziplining down a high tree at camp while your friends cheer you on.

Three years later you are a tall strong boy who loves adventure and camp and is always up for the next challenge to overcome. You inspire us both and many many others you have never met. And your journey inspired a whole movement of Hyper IgM families whose legacy will be that someday we find a cure for this terrible disease that will not require the risk and challenges you went through. We love you Idan! Keep inspiring us every day!

 

Our goal is to raise $15,000 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.

Donate today and help us cure Hyper IgM Syndrome! 

 
You can donate on Idan’s campaign page on Network For Good or on Idan’s Facebook Fundraising page. 

Idan’s 3rd Transplantversary Fundraiser

272EE985-3614-4975-B4E4-E2C98C486B79Thank you for being part of Idan’s Army and helping us find a cure for Hyper IgM Syndrome!

Support Idan’s Journey to a Cure by donating to the Hyper IgM Foundation

Wow, we cannot believe it has already been six years since our son, Idan, was diagnosed with Hyper IgM Syndrome, a one-in-a-million, life-threatening immune deficiency. In a few weeks, Idan will be celebrating not only his 7th birthday but also his 3rd Transplant Anniversary, or  “Transplantversary” – a great achievement for any transplant patient, but especially for Idan, given the failure of his first transplant. This past year has been quite remarkable, with Idan finally meeting his donor, Alex, that saved his life!

It has been truly amazing to see these two get to know each other, and the way Idan’s face lights up every time we mention that we will be seeing Alex. While Idan has become an amazing big brother this year to his sister, Maya, he has gained a “blood” brother in Alex. Alex’s blood and immune system flows through Idan’s veins and has kept him strong and safe as he ventures through finishing 1st grade and going to day camp this summer. But while Idan had Alex to donate his life-saving stem cells, so many other patients with Hyper IgM Syndrome do not have this option. IMG_6207 3

So many other children with Hyper IgM have been less fortunate, whether with respect to transplant outcomes, finding a donor match, or simply living with Hyper IgM. 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.

In the past two years, Idan’s army has raised over $40,000, which goes a long way in supporting the Foundation and the research grants we provide. Importantly, 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 3rd Transplantversary.

Our goal is to raise $15,000 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.

Donate today and help us cure Hyper IgM Syndrome! 
You can donate on Idan’s campaign page on Network For Good or on Idan’s Facebook Fundraising page. 

 

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 making 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 through 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 and limited overhead. 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.

 

Idan’s Story featured on CBS New York News

Gift Of Life Bone Marrow Registry Delivers Holiday Miracle For Family:

NEW YORK (CBSNewYork) – When we say gift of life, we usually think of organ donation.

There’s another, much easier way to give the gift of life through bone marrow or stem cell donation, reports CBS2’s Dr. Max Gomez.

Now during the Festival of Lights, a young Jewish family wants people to know how that gift saved their son’s life.

You would never know it looking at 6-year-old Idan Zablocki playing with his mom and baby sister, but Idan was born with a lethal immune system defect.

“He couldn’t make antibodies and he got a very rare pneumonia,” said Akiva, Idan’s father.

“Terrifying, we were told he had a 50 percent chance of dying,” said mother Amanda.

Idan survived his pneumonia but the only cure for his immune deficit was a bone marrow transplant. His first at age 2 failed.

He then got another from a young college student who had gotten swabbed to get matched and enter the Gift of Life bone marrow registry.

The second transplant worked, but Idan said he was pretty sick in the hospital.

“I felt very bad,” he said, but it soon proved worth the pain when he found out he could go to a regular school.

READ:NYC Marathon Runner Meets Man Whose Life She Saved

Now the Zablocki family has teamed with the Gift of Life registry to get people to make an online menorah, to remind friends and family how easy it is to give.

“It’s not a big deal, it’s more like giving blood or platelets,” said the organization’s Nicholas Hudson.

Mom and dad now have a healthy, happy boy who’s been cured thanks to a bone marrow donor, especially meaningful during this season.

“This holiday we celebrate the miracle of Chanukah, well, we have our own miracle,” said Amanda.

 

Idan’s 2nd Transplantversary Fundraiser

IMG_6207Support Idan’s Journey to a Cure by donating to the Hyper IgM Foundation

It has been over five years since our son Idan, was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency. 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 and a long journey with many hospital stays later, a cure appears to be within our reach. 

Idan is doing amazingly well and just finished his first year in kindergarten. He is looking forward to 1st grade and enjoying many “firsts” this summer. First time walking barefoot in the grass. First time going on a bouncy house. First time running through a sprinkler in the playground. First time in a real summer camp, Camp Yomi, where he will take a bus out to real campgrounds, and have swimming twice a day. First time traveling to Israel and the first time meeting so many family members who live there. All of these are experiences we could never have imagined just a short while ago. 

In July, we will celebrate not only Idan’s 6th birthday but also his second 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 respect to transplant outcomes, finding a donor match, or simply living with Hyper IgM. 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.

In the past two years, Idan’s army has raised over $34,000, which goes a long way in supporting the Foundation and the research grants we provide. Importantly, 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 2nd 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. You can also start a fundraising page through Crowdrise or Facebook and set your own goal in honor of Idan or another HIGM family.

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 making a donation today!

—–

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 through 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 and limited overhead. 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.

Idan’s going to be a big brother!!!

It’s been a long and exhausting 5 years, but 2017 will go down in our family history as the year the tide changed. The year Idan’s immune system began to show its first signs of stabilizing. The year Idan was able to come out of isolation and even go to school. And now, the year that made Idan’s and our dream of growing our family a reality.

When Idan was first diagnosed with Hyper IgM, many of his doctors expressed relief that he was an only child because it reduced his exposure to germs, which, at the time, were a deadly threat. Worse yet, having another child in the future in and of itself appeared to be fraught with uncertainty. With Idan’s diagnosis came my own diagnosis. As a carrier of this dreadful disease, I learned that any child of mine has a 50% chance of inheriting Hyper IgM. This means that a baby boy would have a 50% chance of having the disease and requiring the same interventions that Idan went through. And a baby girl would have a 50% chance of being a carrier, which would mean she may eventually face the same realities as a mother that I do today. So for a period of time, we did not know if we would ever have another child. Thanks to the wonders of modern science and medicine, and a calm in the raging storm of illness and recovery, we have been blessed with a second little miracle – and can sleep well at night knowing that this baby will not have or be a carrier of Hyper IgM.

As we look forward to May of 2018, when we expect to welcome this new blessing into our lives, we wish you all a joyous and wonderful holiday season, and a very happy, healthy and meaningful New Year.

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?

It’s Beginning to Look a Bit Like a Cure (!!!)

 We have been pretty delinquent in posting, but wanted to share with you the latest update regarding Idan.  We are very leery of using the “Cure” word, and truth be told, we are many months off from knowing with certainty that Idan is or is not cured, but we have had some very encouraging test results that brought a sense of joy and relief that I cannot even begin to describe.  So we thought we’d share those results with you, and also share the impact this has had on Idan’s life in a very special way.
First, Idan’s chimerisms. We have been monitoring this number like a hawk, and, if you follow our blog, you know that the chimerism results have played with our heart strings in both the first and second stem cell transplant.  In the first, we watched with hope as Idan’s chimerisms in his T-cell line went from only 7% to over 30% with various interventions to save the graft, only to watch it plummet back down in a slow but steady drop over the course of a year.  This time around, we started with 96% in the t-cell line (exactly where you want it to be), and watched in agony as it took a nose dive shortly after transplant. Again, interventions ensued, and we were able to slow its decline, only to see other cell lines slipping.  Although we only need to replace Idan’s T-cells, if his other cell lines are not in harmony (e.g., are comprised of his own cells and not the donor’s), the prognosis for the long term viability of the donor graft is grim, and we would be looking at another rejection at some unpredictable point in the future.
So we have been monitoring this number with a mix of dread and hope, yearning and fear.  A few weeks ago, we learned that Idan’s chimerisms were stable for the first time ever, and the cell lines that had been dropping had even inched up a bit. Over a year out from transplant and chimerisms stable, with t-cells hovering around 87%, we couldn’t be more thrilled.
Second, Idan’s IgGs. When Idan was first diagnosed, one of the most telling indications of his disease was the fact that he produced zero antibodies. None. This has been the constant gaping hole in his immune system.  We have been giving Idan weekly subcutaneous IgG replacement infusions at home every weekend since he can remember.  Well, the first real test of his immune system is whether he now can make his own IgGs.  Over the summer, we stopped giving him his weekly infusions and began testing his IgG levels every few weeks.  As expected, they dropped over the first couple months as the IgGs that were floating around his bloodstream from the infusions slowly dissipated.  But a couple weeks ago, when we tested Idan’s IgG’s, now four months since his last infusion, they held steady at 475. Not zero. 475.  Idan is making his own IgGs!!!!!  An impossibility for a child with Hyper IgM Syndrome.  So, notwithstanding the fact that Idan has had four viruses since starting school (including parainfluenza, which is a pretty nasty one), he has gotten over them with relative ease.  This is the most encouraging sign so far. And it allowed us to give him his first couple vaccines, shots that even Idan welcomed with joy – no tears and no flinching! – understanding the magnitude of achieving this incredible milestone that has always been out of reach.
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Now, Idan.  As you know, Idan started school in September.  What you don’t know is that this is a very special school that caters to children who are exceptionally bright and advanced learners.  This means that Idan is surrounded by children who share his joy and love of learning, and by teachers who are well-trained and sensitized to socialization struggles that often accompany high IQ, which means they have been amazing sources of support for our Idan, who has been thrown into the deep end of socialization after only knowing what it is to be in isolation.
Importantly, Idan walks into school and sees a row of cubbies with his name sandwiched in between all the other kids’ names.  Inside the classroom, his name again appears alongside his classmates’ names – on the cubbies, on the rug, on school supplies, on pictures and projects hanging up on the walls.  When he walks into the classroom, he is greeted by a chorus of sweet voices saying, “Hi, Idan!” (They even all know how to pronounce his name!).  He belongs.  He feels it.  And he’s right where he’s supposed to be.
We were worried that Idan would be overwhelmed or scared by school. Boy, were we wrong.  He walks around with a light inside him so bright, I swear his whole face is glowing. His laughs are heartier, his smiles are wider, his eyes are shining brighter.
For those who have any thought about donating blood or bone marrow, this is what it means to save a child’s life.

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.