Help Fight for Idan

For: Idan Zablocki
Organizer: Amanda and Akiva Zablocki
$248,507
of $250,000 goal.
Raised by 1732 donors
99% Complete
This fundraiser is closed. Thank you for your support!

The Story

*** We are updating http://www.idanmyhero.com/ daily with updaes from tranplant. ***


** In The News **

Idan's story has been recently featured again in the New York Daily News, as well as in the Jewish Daily Forward and the Huffington Post.  Idan’s story has also been featured on ABC Eyewitness newsNBC 4CBS news, the New York Daily News, and most recently in an op-ed in The Times of Israel. As a result of this media coverage, hundreds of people have visited Idan’s page and made a donation, and shared our story, and several people contacted us who are dealing with similar challenges to show their support.  


Remmber to follow us on Facebookand on our new blog: Idan My Hero!

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(Photo SUSAN WATTS/NEW YORK DAILY NEWS)



How we got here: Idan's Story




Last July, we stood in front of a crowded room and introduced our baby boy to the world.  We spoke of the long journey that we took to get to this moment in our lives.  Akiva's quest to find a brain surgeon willing to and capable of operating on his brain stem to remove a tumor threatening his life, and unleashing the superhero within.  Amanda's pursuit of her childhood dreams.  Our love story.  And now, Idan.  A child born to parents who could not be more grateful, more blessed, more thrilled to begin this new journey as a family.  Hence Idan's name.  Idan is Hebrew for "time," or "era."  We knew our little guy would be unusually strong, and we wanted him to have an equally strong name.  What could be stronger and more precious than time? 

Nearly a year later, Idan has proved us right.  He is precious, uniquely strong, extremely brave, and has began his own journey. Idan has been diagnosed with a very rare and life-threatening immune deficiency disorder that affects only 2 in 1,000,000 people.  This is his story, and how you can help. 

In April, Idan started breathing very quickly.  There were no other symptoms to cause alarm.  He played, ate, and seemed perfectly normal, except for his respiratory rate. We went back and forth to the doctor, everyone believing it was a sneaky virus that would take its course and go away.  When two weeks passed and Idan began looking fatigued, we took him back to the pediatrician for a second x-ray.  We were rushed to the hospital, and Idan was taken to the pediatric ICU to be given oxygen.  He was hospitalized for several days before we found out the culprit, a very rare form of pneumonia caused by the most common of fungus that lives in nearly all of us - PCP.  It wreaked havoc on his baby lungs, and he had to be placed on a ventilator for 13 days to help him breathe.  The doctors busily ran tests to determine why he developed PCP, a condition that usually affects those without an immune system.  But he was our healthy 8 month old boy, right?



We soon discovered he had a severe immune deficiency, which made him uniquely susceptible to this aggressive fungus that threatened to take his life.  We stood by his bedside, for 21 days, wearing gowns, masks and gloves, unable to hold, kiss, or even touch him.  Despite all that, and despite tubes invading every inch of his body, Idan courageously found strength to smile, even to laugh.  We stood by his bed and read to him, sang to him, danced for him, and deep down, we knew that he was the one comforting us the entire time.  His smiles and intuitive stares, ones which belonged to a much older adult, not a child, told us he was strong and going to survive the PCP and conquer his immune deficiency.  After three excruciatingly long weeks, Idan's lungs finally recovered.  He regained his strength and was discharged from the hospital.  



Idan came home and resumed many of his normal routines, and you would never know he spent weeks in the hospital fighting for his life.  But after Idan was discharged from the hospital, we faced a new challenge - diagnosing the underlying problem with his immune system that made him uniquely susceptible to the fungus that causes PCP.  It was not long before Idan was diagnosed with Hyper IgM, an extremely rare and life-threatening genetic primary immune deficiency disorder where the immune system fails to fight against even the most harmless of germs - hence the PCP.  We have no family history of the disease and never saw it coming.  



Today, we are treating Idan's Hyper IgM with regular weekly infusions of immunoglobulin replacement therapy and antibiotics to prevent reoccurrences of the PCP.  This will protect him from the majority of infections, bacteria and viruses, but cannot protect him against everything.  To date, most individuals with Hyper IgM have not survived past their third decade of life, and are often plagued with recurrent infections and high incidence of cancer.  We are hopeful, however, that the medical advancements made in the last ten years with stem cell transplantation in children with Hyper IgM will allow Idan to live a normal healthy life.  When his lungs have fully healed, Idan will need a stem cell transplant, which, though it comes with its own set of risks and challenges, is the only known cure.  Thankfully, we have already found a donor who is a perfect match.

How You Can Help

We need your help raising funds to enable us to make sure that, no matter what happens to us, Idan has the best possible medical care, a successful transplant, and enough funds to cover the medical costs he will incur along the way.  This will help to pay for Idan's hospitalization for the PCP, extensive genetic testing, weekly infusions of immunoglobulin, frequent trips to the pediatrician, immunologist, pulmonologist, and transplant team, as well as the cost of a stem cell transplant and future hospitalization.   We know we cannot do this alone, and, to that end, we have set up this fundraising page for Idan. 

Please post, send to your family and friends, and share liberally.  We appreciate any and all support that you can provide.  Please note that any gifts to Idan are not tax deductible. If you would like to pray for Idan, his full hebrew name is Idan Yarden Ben Esther.



We will literally go to the ends of the earth to find the best medical care for Idan. This disorder is so rare that there are only a few doctors around the world that have even encountered it, let alone know how to treat it effectively.  We are hopeful that, with your help, Idan will have access to these experts and will be cured.



Thank you,

Amanda, Akiva & Idan

Fundraiser Updates

Posted on October 21, 2013

Posted on October 21, 2013

Most of our updates on our our blog: IdanMyHero.com. See them all there. Hear is the last one from today: 

IDAN'S BLOG

Day -3: New Mantra => One more good day = One less bad day.

by Amanda• October 20, 2013• 0 Comments

Anyone who knows me knows that I am a highly rational person.  Learning how things work, understanding processes, problem solving; these are my coping mechanisms.  But there’s a small part of me (inside all of us perhaps) that still believes – or is afraid not to believe – in jinxes, bad luck, superstition, and all that jazz.  The part of me that waits for the other shoe to drop.  I’ll give you an example.  One day, on my way home from work about seven months ago, I stepped off the subway and saw the sunset straight ahead.  In that moment (and I remember it clearly), I felt like I was the luckiest woman in the world.  I was enjoying my work and planning a huge event for the women’s group about issues immensely important to me and my female colleagues.  Better yet, I got to return home every night to my beautiful baby boy and darling husband who I love with all my heart.  But in the midst of that thought, before I even had time to enjoy it, I gulped and feared when the other shoe would drop.  And in April, only a couple weeks later, my beautiful baby boy was rushed to the hospital, and so began our journey.  I have thought back to that moment, where I thought I had it all, many many times since then.  Did I jinx myself by being happy and believing us to have it all?

Last night, my father said something to me that changed my entire perspective.  Idan has been feeling very well compared to your average chemo patient.  He has been energetic and happy, drawing with crayons for the first time, decorating his crib with stickers (really, I kid you not), and giggling like a maniac when we act silly with him.  And last night, I felt that fear again – when is the other shoe going to drop?  But, as though reading my mind, my father said to me, “I am so glad Idan has been through four days of chemo, and is still feeling great.  Every day he feels good is one day less that he has to suffer from all this.”  And suddenly it all clicked.  Every day he feels well is a blessing, no matter what tomorrow brings.

And of course, last night Idan did have a terrible night, inconsolably crying, and barely getting any sleep.  He received his first dose of morphine to help with pain.  But I for one am feeling thankful that it took this long, and glad that no matter what tomorrow brings, Idan had at least four less days of feeling bad.


Posted on October 7, 2013

Posted on October 7, 2013

Update from Seattle

Thank you for being Idan's army!

Hello Idan’s army,


Greetings from Seattle!  We just finished our second week of pre-transplant testing here and things are going well. We wanted to thank you all again for the endless support and encouragement, and for helping us get Idan to Seattle. We have been keeping the blog updated with our day-to-day activities and posting pictures on Facebook. In case you missed any, we will have highlights below.


Many of you have asked for our address and we finally have one to share with you. We will move into an apartment about a mile from the hospital. We have Akiva’s childhood friend from Israel to thank for this arrangement, as he just moved into that complex as well and arranged for us to sign a lease for the next few months. Our new address is 6367 NE Radford Dr #4012 Seattle, WA 98115.


Idan will likely be admitted to the hospital on October 15th, and discharged some time in December or so.  Once he is discharged, he will still need to be in complete isolation and home-bound for the next couple months until it is safe for him to travel back to New York.  During this time of isolation for Idan, we hope to create for him an IdaniWonderland in his play room. We would love your ideas on how to keep a then-17 month old entertained, physically active, and happy to be indoors. We have created an Amazon Wish list of some fun activity toys we are thinking of and would love suggestions!  


This week, the social worker at the hospital asked us how we coped with everything we are going through. First, we said that Idan makes it all so easy with his positive attitude and joy. But, importantly, we added that all the support and encouragement we are getting from #TeamIdan has kept us strong. Once again, we cannot thank you all enough for everything you have done for us in the past few months. From helping us fundraise, to running toy drives, to sending books, gift cards, and warm wishes, you have made this journey much easier on our family, and kept us going. Thank you.


Lastly, for those who missed it, here are some recent posts on our blog, www.idanmyhero.com:


Countdown to transplant - our first day of tests


Countdown to transplant... Day 2 of testing


Day 3 of pre-transplant testing - painful


Hospital waiting rooms


Week 2 of Pre-transplant Testing - No, we're not done yet.


Posted on September 20, 2013

Posted on September 20, 2013

IDAN'S BLOG

Update – We found a flight! Thank you for all your support!

by [email protected]• September 18, 2013• 0 Comments

09/20/2013

Great news!!! We are literally floored. After 48 hours of frantically searching for a private jet to fly out to Seattle, sharing our plight with nearly 25,000 people, hundreds of which were sharing with their contacts and hunting down leads, we have a flight! A very generous wonderful man has offered to fly us all back in his private jet as he returns to the west coast from New York City tomorrow night. We are overjoyed and extremely humbled by the outpouring of support, and the way you all mobilized so quickly to help Idan. He is quite a special boy and you all played a part in helping to save his life this week. THANK YOU from the bottom of our hearts!!!

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