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Help Fight for Idan

$248,507raised of $250,000 goal
99%

Organizer: Amanda and Akiva Zablocki Beneficiary: Idan Zablocki

Idan is one in a million - literally. Help him fight Hyper IgM, a very rare life-threatening genetic disorder that plagues his immune system, so he can live a full, long and healthy life.

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*** 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 Facebook and on our new blog: Idan My Hero!

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<img src="http://gallery.mailchimp.com/dc715b4d95028b062c66e88f7/images/idan9n_3_web.1.jpg" alt="" width="250" height="375" border="0">

 

(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

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Updates

Updates

10/20/2013
by Amanda and Akiva Zablocki
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  • October 20, 2013 • 0 Comments

<img class="size-medium wp-image-317 alignleft" src="http://www.idanmyhero.com/blog/wp-content/uploads/2013/10/Day-3-300x232.jpg" alt="Day -3" width="300" height="232">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.


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10/06/2013
by Amanda and Akiva Zablocki
Update from Seattle

Thank you for being Idan's army!

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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.


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09/20/2013
by Amanda and Akiva Zablocki

IDAN'S BLOG

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

by  • September 18, 2013 • 0 Comments

<img class="size-medium wp-image-142 alignleft" src="http://www.idanmyhero.com/blog/wp-content/uploads/2013/09/Generosity-300x300.jpg" alt="Generosity" width="300" height="300">

 

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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09/18/2013
by Amanda and Akiva Zablocki

IDAN'S BLOG

Idan needs your help flying to Seattle

 

<img class="size-medium wp-image-218 alignleft" src="http://www.idanmyhero.com/blog/wp-content/uploads/2013/09/Priave-Jet-300x200.jpg" alt="" width="300" height="200"><img class="size-medium wp-image-185 alignright" src="http://www.idanmyhero.com/blog/wp-content/uploads/2013/09/photo-1-300x300.jpg" alt="photo (1)" width="300" height="300">
Looking for a Private Jet to fly out to Seattle Having exhausted all other options, we are turning to you for help!

Idan needs your help getting to Seattle! Anyone have access to a private jet or know anyone that does? We were supposed to fly through Corporate Angels to Seattle because of his severe immune deficiency, but that fell through. Our first appointment in Seattle is September 24th (Tuesday). The owner of the Jet would be able to donate the flight through Corporate Angels for a tax deductible.

Commercial flights pose tremendous risk to Idan because of his severe immune deficiency. Between the dense crowds at the airport and sitting on a plane with dozens of strangers, commercial flights are well-known for germs. Idan’s too little to keep a mask on, and even that cannot protect him from all the germs. We’ve looked into all the non-profit options for flying by jet, and they either do not have any flights available in the next few days, or would require us making several pit-stops along the way.

Thanks in advance for your help!

~Amanda, Akiva & Idan

 


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09/17/2013
by Amanda and Akiva Zablocki
Last call for Idan-Do's! Here's a sneak peak at what you all helped to create for Idan's hospital room. If you'd like to participate, post a pic by Thursday and make sure to tag Help Fight for Idan so we know to include it! Instructions below.
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09/04/2013
by Amanda and Akiva Zablocki
Shana Tova U'Metuka

Thank you for being Idan's army!

<img src="http://gallery.mailchimp.com/dc715b4d95028b062c66e88f7/images/Blink_e229255d_172e_4918_9cf5_72b646623cf9_9_2013_08_17_1.jpg" alt="" width="560" height="315" border="0">
Dear Team Idan,
 
We wanted to share with you some good news.  Seattle called us this afternoon to let us know that they have confirmed the donors and will be scheduling Idan’s transplant very soon.  We should be leaving for Seattle within the next few weeks!  While we are very excited to get Idan on the road to a cure, we also of course very anxious as the time for transplant is soon upon us.
 
This Wednesday night, we will be celebrating the Jewish New Year.  On Rosh Hashanah, Jews around the world pray that their loved ones be written into the book of life, and have a sweet and good year.  We will be praying for all these things and more for our little Idani, and hope that by this time next year he will be completely cured.  For those who would like to pray for Idan, his Hebrew name is Idan Yarden ben Esther. 
 
We wish you all a sweet and happy new year.
 
Love,
 
Akiva, Amanda & Idan

P.S. Don't forget to follow us on Facebook!  Our Help Fight for Idan page surpassed 1,000 fans today.  Thank you all for your support!

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08/27/2013
by Amanda and Akiva Zablocki
 
Seattle Update and the Idan-Do Mohawk Campaign

Thank you for being Idan's army!

<img src="http://gallery.mailchimp.com/dc715b4d95028b062c66e88f7/images/The_Idan_Do.jpg" alt="" width="560" height="315" border="0">


Dear Team Idan,
 
Thank you for your continued support of Idan's fight for a cure.  Over the last few months, over 1300 have donated to Idan's cause and thousands more have shared his story with their friends and networks.  Idan's story has been covered by many news outlets and has reached millions of people worldwide.  Your kind words of encouragement, your support and your prayers have allowed us to face this challenge knowing that we have an army behind us.  We are forever indebted to you.
 
Here are a few updates on what has been going on with our son:
 
The Idan-Do Mohawk Campaign:
 
Before Idan loses his hair to chemo, we wanted to give him something to remember his signature style by (and remind him of all the people cheering him on) while he undergoes his bone marrow transplant.  So we started the Idan-Do Mohawk Campaign, where people can post pictures of themselves, their childrenpets, or even stuffed animals, sporting Idan’s signature hairdo, the Mohawk.  We are creating a large poster for Idan’s hospital room, a piece of which is included above, so that he has a constant reminder that he has an entire army behind him helping him through this difficult time. 
 
Dozens of people have joined in the effort to raise awareness for Help Fight for Idan by sharing a photos sporting Idan's signature hairdo. You can join in on the fun as well.  The instructions are available at here for those of you who are on Facebook, and for those who do not have Facebook, you can email us a photo at akiva.amanda@gmail.com and we will be sure to include it!
 
Transplant update:
 
After a few very challenging weeks dealing with insurance-related issues that threatened to throw us completely off track, it seems that we are finally moving forward again. Yesterday, we received the good news that the insurance company finally determined that Seattle’s treatment protocol is medically necessary and has given the hospital the approval to move ahead with identifying the donor.  We hope to have a date for the transplant within the next few weeks.  In addition, the insurance company is working very hard to arrange for additional coverage for Idan to help fill some of the substantial gaps in coverage that exist under our current plan.  They informed us yesterday they are making significant progress, and we pray that it all works out!  So, after losing 10 years of our life to the stress and even fearing for a while that the whole transplant might not be covered, things are starting to look much better.  If all goes well, we are back to our original goal of $250,000, which was based on the assumption that the transplant would be covered, rather than the incredibly daunting figure that we thought we might be looking at last week.
 
We do not know how we would have gotten through the last few months, kept our resolve and kept fighting for Idan to get the treatment he so desperately needs without all of you.  When our legs are about to give out from underneath us, you have been the arms that have held us tall.  Thank you for giving us the strength to go on fighting.  As we now move toward transplant, our family will need all the strength we can get in the months to come.
 
Yours truly,
 
Amanda, Akiva and Idan

P.S. Don't forget to follow us on Facebook for more updates and cute pictures of Idan.  


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08/10/2013
by Amanda and Akiva Zablocki
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** Update 08/10/2013 **

We wanted to thank all the donors to Idan's fundraiser. On Thursday, we surpassed 1000 supporters and Idan's army is growing every day. Much thanks to Beth Stebner, Anne Cohen, and Tova Ross for writing articles in the in the New York Daily NewsJewish Daily Forward and the Huffington Post. We still do not have a date for transplant yet, but we hope to heading out to Seattle towards the end of September. Make sure to Like the Help Fight for Idan Facebook Page for more updates on Idan and our preparations for transplant. 

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08/03/2013
by Amanda and Akiva Zablocki

After 3 months of exhaustive research, the choice is clear.  Seattle, here we come!

<img src="http://gallery.mailchimp.com/dc715b4d95028b062c66e88f7/images/Seattle_Skylinef8ad5827951f.1.png" alt="" width="560" height="209" border="0">

Dear friends, family, and supporters of Idan,

Three months ago, when Idan was diagnosed with an extremely rare immune deficiency, we decided that nothing would stop us in our search for a cure. We sought out and consulted every Hyper IGM expert and transplant center that might have experience treating this terrible genetic disorder, and today we can happily announce we have found that place, and hope to be moving forward with transplant in September.  

Like his father had done before him, we created a Team Idan, and read and gathered any piece of published data on Hyper IGM. We consulted and/or visited dozens of experts in the US, Israel, Canada, and Europe, including doctors in New York, Boston, Durham NC, Cincinnati, Philadelphia, San Francisco, Los Angeles, Texas, Chicago, and Seattle, as well as the National Institute of Health, Toronto, the U.K., and Israel.   We spoke to patients from Florida, Utah, Illinois, New Jersey, and England.  We dove deep into the science behind the immune system, and learned the names of a dozen chemotherapy drugs, immunosuppressants and steroids as well as their side affects and toxicity levels.  We have become what they call “e-patients,” determined to be fully engaged in Idan’s treatment and cure. But in the end, we heard over and over again, both from doctors and from other patients, we should go with our gut. After all the research was done, after every rock was unturned, we should go with the centers and doctors we trusted the most. That center is Seattle Children’s Hospital.
 
Of course, the first and main reason we chose Seattle is that they have the expertise to transplant and cure Idan, boasting lower risks of death, long-term complications, and toxicity from the chemo. As we have mentioned before, there are three categories of "fatal" complications in a bone marrow transplant:  (1) complications from the chemo; (2) infections; and (3) graft versus host disease.  Each hospital has a different approach to managing it, but we've found that there is one drug that is being used only in Seattle that can substantially reduce all three of these risks here.  This drug is called Treosulfan.  This drug is widely used in Europe and Asia, but has yet to get FDA approval in the United States.  Seattle was using the drug as part of a clinical trial several years ago, and has been granted an IND to continue using the drug.  The rest of the hospitals use a drug called Busulfan that carries significantly more risks of short term and long-term side complications (including sterility), and yet Treosulfan is equally capable of wiping out the immune system to allow for full engraftment.
 
To add to this, the bone marrow transplant was actually invented in Seattle and the lab that our immunologist runs there was the first to discover Hyper IGM; they are without a doubt both pioneers and leaders in this field. The transplant floor is brand new, built last year by the Gates family, and is clean and high-tech. If we have to live in a hospital 24/7 for 4-6 months, this new facility is a huge plus. Lastly, we truly loved the doctors and nursing staff and the rest of the friendly people we met at the center. We have been getting good vibes from Seattle for a couple of months now, and turns out that was the gut feeling we were waiting for.
 
It is still going to be an uphill battle. Even before Idan starts the chemo to make room in his bone marrow for the donor transplant, we are dealing with dire financial issues that no one in our situation should ever have to deal with. The estimate we have received from the hospital for the transplant is between $600,000 and $1,000,000. They, like other centers, gave us information about fundraising, like contacting local communities and having a bake sale. Our insurance plan will likely only pay about half of this, and rest will be on us. And to add to this, we both have to move away for 6 months and take an unpaid leave, while paying out of pocket for the health plan through COBRA and probably purchasing a second plan.
 
This is where you come in. We cannot thank you enough for your help and support in the past few months. We never would have had the strength necessary to find the right doctor and hospital for Idan if not for the constant support and encouragement we have received from our family, friends, and strangers worldwide.  We have raised more funds then we ever thought possible, but we are still less then half way to our goal. We hope we can once again call on you to help spread the word about Idan. We have seen amazing responses every time Idan’s story goes out to a community, synagogue or church listserve. We have seen great responses every time someone writes an article in a local paper. And we have seen amazing responses when you shared our story to your email contacts, or on social media. Please continue to share our story and help us cure our son.
 
Last night, there was a moment when we felt it was all for nothing – that all of our consultations, trips, and hours spent into the night researching conditioning protocols, complications, and long term risks, would be totally derailed by an inability to afford the care our son so desperately needs.  And in that moment, we felt utterly defeated.  This morning, after scrolling down and seeing the thousands of wishes and prayers and words of encouragement on Idan’s fundraisingand Facebook page, we know we can face this challenge too.
 
With much gratitude,
 
Akiva, Amanda and Idan
 
P.S. Don’t forget to follow us on Facebook for more updates and cute pictures and videos of Idan.

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07/17/2013
by Amanda and Akiva Zablocki
If you're going into battle, it helps to have an army behind you.  Thank you for being Idan's army!

Dear friends, family, and supporters of Idan,

Thank you so much for your continuing support.  You have given our family so much strength and hope.  Since sharing Idan’s story with the world, hundreds of people have rallied behind him, cheering him on.  You are all connected to him now, and we will be forever grateful.
 
In addition to our fundraising page, we have now set up a Facebook page called Help Fight For Idan. We update this page frequently with more details and pictures of Idan’s adventure.
 
A few quick updates on our hunt for a cure:
 
So far we have visited doctors in New York, Durham NC, and Boston.  We have consulted and will be visiting in the coming weeks with doctors in Philadelphia, Cincinnati and Seattle, and we have received opinions from dozens of doctors in the US and abroad, including from the UK, Canada, and Israel.   We hope to make a decision by the end of July on the best place for Idan’s transplant. 
 
Idan’s story has been featured on ABC Eyewitness newsNBC 4, and CBS news, as well as the New York Daily News.  Look out at the end of the month for Idan’s cameo in a special on NY1 about the Affordable Care Act as well.  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. 
 
Please continue to share our story and news converge with your communities and friends. We thank you for your support, prayers and thoughts.
 
Best,
 
Akiva, Amanda & Idan

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07/02/2013
by Amanda and Akiva Zablocki

Hi all,

Thank you all for the outpouring of support in the past few days. We were featured in the NY Daily News today, and there has been an amazing response from kind and caring people around the country who want to support Idan on his journey. Here is the link to the article: http://www.nydailynews.com/new-york/nyc-family-raising-money-sick-son-article-1.1383540

We also had three channels interview us today to help spread the word about Idan's fight. We will be on NY local news CBS 2 and NBC 4 between 5 and 6 PM and ABC Eyewitness News at 11PM.  Make sure to check it out.

Again, we cannot thank you enough for all your support. Amanda's new catchphrase from the article said it best: "At the end of the day, if you're going to go into battle, you want to have an army behind you."

Best,

Amanda, Akiva and Idan. 


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06/28/2013
by Amanda and Akiva Zablocki
Greetings from Baltimore! We are in the second leg of our journey to find a cure for Idan. We are in Baltimore attending the national IDF (Immune Deficiency Foundation) conference, along with more than 1,000 other patients and caregivers diagnosed with an immune deficiency and over 30 professionals who have experience treating such diseases.  

Among the 1,000 patients and caregivers, it seems there are about four families affected by some form of Hyper IgM here (yes, there are several classes of Hyper IgM).  We had an opportunity to meet them, and shake the hand of one of the oldest Hyper IgM patients in history - he just turned 40 - which brought tears to our eyes.  

We also spoke to several doctors.  We had a very long conversation with a doctor in Chicago performing transplants for Hyper IgM patients, as well as a doctor in Seattle who is an immunologist that works closely with the transplant team.  Both had yet another different technique for transplant, and we now have even more options to choose from.  Seattle, which was not at the top of our list, has moved directly into our radar and we are considering speaking to their transplant team.

We have learned some new facts along the way, including that Idan has the most severe form of Hyper IgM based on the fact that he has no CD40L function.  Apparently there are those that have some function to their CD40L (the cell that allows the T-Cells and the B-Cells to communicate with each other), and in those cases the clinical effects of the Hyper IgM can be milder.  Idan, however, has zero CD40L, so his Hyper IgM is more severe.  That said, there seems to be a concensus that, with the bactrim and immunoglobulin therapy he is taking and the other precautions we are taking to keep him away from germs, he is likely well protected until transplant. 

We have one more day of the conference left.  We'll post another update if we learn anything new tomorrow.

Love to all,

Amanda, Akiva & Idan



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06/26/2013
by Amanda and Akiva Zablocki
Tomorrow we head to Baltimore for the National Immune Deficiency Foundation Conference, where we'll meet other families dealing with similar challenges, as well as a few experts on Hyper IgM and other immune deficiency diseases.  We'll let you all know how it goes!
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06/22/2013
by Amanda and Akiva Zablocki

All,

Thank you for your warm wishes for our trip to Duke, the first of many trips to hospitals around the country.  The trip was well worth it as we learned a lot and we now have a good option for transplant (if we can figure out how to relocate to North Carolina for six months of course).  Here is a brief summary of our Duke trip and why we have decided, among other things, to change our goal.

Our first and perhaps harshest lesson is that, for a baby Idan's age and with his disorder, a stem cell transplant poses a 10 to 15% chance of death.  Why transplant at all then, you ask?  Well, after speaking with Dr. Buckley who has been following many Hyper IgM patients from birth, some until their third and fourth decades of life, the risk of death increases exponentially as Idan gets older and is exposed to more potentially fatal opportunistic infections and most certainly malignant cancers. A 10-15% mortality rate for stem cell transplant begins to look pretty good all things considered, and has the potential to be curative.  The key now is to determine how to reduce that risk to the greatest extent possible, and how to make sure that we do this once and we do it right.

So, we have heard how Duke plans to reduce this risk. The risk comes from three sources: infections, adverse reaction to chemo, and graft versus host disease. Duke recommends using a lower dose of chemo, certain prophylactic medications, and bone marrow as opposed to peripheral blood or cord blood.  Each of these steps will help to reduce the risk of mortality, and also increase the chance Idan will accept the transplant.

Importantly, Dr. Buckley, who has seen Hyper IgM patients for the past 40 years and has seen the entire spectrum of how these individuals were affected by the disorder, both for those who opted for transplant and those for whom transplant was not an option, recommends this: Do the transplant as soon as you can with the institution that has the most experience. Idan is the "picture of health" right now, and thus has the best chance of survival and CURE.

So we have only started our journey, but agree that we need to do this once and do it right. This means visiting all the experts and hearing how they plan on reducing the risk. If it were your child, wouldn't you go to the end of the earth, too?

Now, for our goal.  According to materials provided by Duke, the average cost for families across the country to undergo a transplant is approximately $650,000 for the first year.  We hope this is a high estimate in our case, where we have insurance that will cover a large portion of the medical expenses of transplant.  However, our insurance does not cover IVIG, a very costly treatment Idan will need frequently for the year during and post transplant.  Because this is not covered, we will likely need to pay for private insurance, but we understand there is no guarantee we will be able to purchase insurance in such a short time frame that also covers IVIG and also does not charge us a very high premium because of Idan's condition.  Regardless, we have estimated our expenses to range from $250,000 to $350,000, which is why we've raised our goal.  We have not included in our goal the other non-medical expenses such as the visits to doctors across the country, loss of income for six months or more, and relocating expenses.

We hope you will continue to share Idan's story, email your contact lists, and post on your facebook pages and twitter so that we may meet our goal, and, more importantly, be connected with any other experts (be they doctors or researchers) that can help us reduce Idan's risk so that we can do this once and do it right.

Love and best wishes to all,

Akiva, Amanda & Idan


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06/18/2013
by Amanda and Akiva Zablocki
Off to Duke tomorrow morning to visit with Dr. Rebecca Buckley's team!  Wish us luck!
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06/15/2013
by Amanda and Akiva Zablocki
All,
 
We wanted to give you a quick update and thank you all for your tremendous efforts. 
 
After less than a week and a half of fundraising, we've raised close to $55,000 - over half our current goal! 
 
In addition, we've been put in touch with not one, but several, transplant doctors and immunologists around the world who are familiar with Hyper IgM - all thanks to you.  We are now in the good position of choosing between several highly reputable facilities, giving Idan access to the best physicians out there. 
 
Lots of love,
 
Amanda, Akiva & Idan
<img class="ajT" src="https://mail.google.com/mail/u/0/images/cleardot.gif" alt="">

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06/09/2013
by Amanda and Akiva Zablocki
Idan update:  We saw the pulmonologist last week and he believes Idan's lungs are doing very well and should be strong enough for transplant.  This is great news, and should allow us to move forward quickly once we choose a doctor/hospital.  We are getting ready for a trip to Duke to visit one of the expert transplant doctors for Hyper IgM and other immune deficiencies.  Wish us luck!

Fundraising update:  With your help, we've raised almost $40,000 - nearly half of our goal - in only a few days!  Idan's story has been read by over 1,000 people, 261 generously donated, and hundreds more have shared Idan's story through Facebook, email, and Twitter!  Through your efforts, we've even been put in touch with another doctor who has performed a successful Hyper IgM transplant.  Thank you so much!
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06/05/2013
by Amanda and Akiva Zablocki
We are extremely touched and humbled by the outpouring of support.  Thank you all for sharing our story, donating, and spreading the word.  Please continue to post and share on FB, email, and otherwise.  Love to you all.
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