Author: Admin

So… Seattle?

 

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

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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 fundraising andFacebook 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.

 

Columbia University Alumni Rally behind Idan’s Cause

We were so touched to discover that Idan’s story was featured in Columbia University School of General Studies’ News Letter. As proud and active CU alums, it was humbling for us to know that we had the support of the community.

Idan My Superbaby – an article by Erica Chernosfsky in the Times of Israel

Update

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

A Story of Hope: Our Family’s Hunt for a Cure

Running. That’s what I remember most.  Running down the corridors of the hospital with my son Idan in my arms, running all the way until I reached the car.  I ran believing it to be the only way to protect Idan from the germs that lingered in every corner.  I ran to escape from the experience I wished so desperately to leave behind.  We spent three weeks in that hospital, watching our sweet baby boy battle a life-threatening illness, requiring a ventilator to breathe, and even fully recover, only to find out the battle had just begun.

 

Idan was born a healthy beautiful boy, and has lit up our lives ever since. His smiles are contagious and his laughter can fill a room.  In many ways he is like his father, Akiva, who I met when we were students at Columbia University.  Akiva wore an eyepatch over his right eye, and I soon learned that he cheated death.  Diagnosed at age 25 with an “inoperable” tumor in his brain stem, he was told he had only a few years to live.  He could not accept that as his fate, and sought out every neurosurgeon in the country until he found one willing to operate.  He is now a brain tumor survivor, and a real life superhero who has saved many lives by sharing his experience.  When we chose Idan’s name, we knew we wanted it to convey the miracle that brought him into our lives, and symbolize how he was always interwoven with our past and inextricably linked to our future.  We chose the name Idan, Hebrew for “era,” because what it really means is the passage of time.  Time is ubiquitous but elusive, pure, precious, stubborn and unwavering.  There could not be a more perfect name for our son.

 

When Idan was 8 1/2 months old, after recovering from a mild cold, he began breathing very quickly. It was every parent’s worst nightmare.  The cold that never quite went away.  No fever, no chills, no problems eating, drinking or sleeping – just a quickened breath – and a hidden danger lurking beneath the surface.  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 to look fatigued, we took him back to the pediatrician for a second x-ray.  This time, we were rushed to the ER, and Idan was taken to the pediatric ICU to be given oxygen.  He was hospitalized for several days before we found out the culprit, pneumocystis jiroveci pneumonia (“PCP”), a very rare form of pneumonia – caused by the most common of fungus that lives in nearly all of us.  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 his immune system was severely compromised, which we would later find out was due to an extremely rare and life-threatening genetic primary immune deficiency disorder called Hyper IgM, where the immune system is unable to fight against even the most harmless of germs such as the fungus that causes PCP.  For 21 days, we stood by his bedside wearing gowns, masks and gloves, unable to hold, kiss, or even touch Idan.  Despite all that, and despite tubes invading every inch of his body, Idan courageously found strength to smile, even to laugh.  We read to him, sang to him, danced for him, and yet, 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.  The day he was discharged, we ran through the hospital, Idan in my arms, trying to avoid all germs possible so he wouldn’t get sick, but mostly in disbelief that we’d ever make it out of there.

 

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.  Nonetheless, we live in constant fear of another infection.  We are treating Idan’s Hyper IgM with weekly infusions of immunoglobulin replacement therapy to fill some of the holes in his immune system, and antibiotics to prevent recurrences of the PCP.  The immunoglobulin replacement therapy 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.  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.  We are incredibly thankful to have already found a match, but now we need to find a hospital capable of transplanting him.  Because his condition only affects 2 in a million people, the doctors who have treated this disease are few and far between.  Just like Akiva did eight years ago, our family is again on the hunt for the doctor who is doing it best, and doing it right.

 

I have since learned that I am a carrier of Hyper IgM.  Ironically, my husband and I underwent extensive genetic testing prior to having children, but Hyper IgM is so rare it is never tested for, so we never knew I was a carrier.  As a carrier, I do not have any symptoms, but it turns out that there is a 50% chance that my sons will be born with the disease, and a 50% chance that my daughters will be carriers and pass the disease to their sons.  In many ways, we feel incredibly fortunate that this is the first instance of Hyper IgM in my family, considering that the many men in our family who apparently had a 50% chance of being born with the disease were born healthy instead.

 

As a mother, it tears me apart that I unwittingly passing along this horrible disease to my beautiful baby boy.  All I can do now is protect and fight for my son to make sure he gets the very best treatment, has a successful transplant so that he can live a long, healthy, and normal life.

 

My husband, who wears his eyepatch with pride, gives me hope that Idan, too, can be cured.  In June, we set up a fundraising page for Idan to assist with medical expenses, and, since then, hundreds of people have lined up to show their support for Idan and to help us through this next battle.  We now have an army behind us, and we’re ready to face whatever comes next.


Our story is a story of hope, resilience, and perseverance against all odds.  Idan, just like his father, will overcome.  After all, he is the son of a superhero.

Hundreds Rally Behind 1 Year Old Jewish Boy in Need of Stem Cell Transplant by, Zack Pontz:

Idan Zablocki. Photo: Help Fight for Idan at yourcaring.com.

A rare immune disorder has consumed the life of one young Jewish boy on New York’s Upper West Side, and now his parents are asking friends, family, and the public to help cover the cost of the skyrocketing medical bills.

Little Idan Zablocki was diagnosed with Hyper IgM in his first year of life. The disease affects only two in a million and makes it nearly lethal to be exposed to germs—something hard to avoid in New York City.

“There’s pros and cons,” Idan’s mother, Amanda, told the New York Daily Newsabout living in New York City. “You’re very close to the hospital and your pediatrician. But we can’t take him on the train, we can’t take him on the bus. I never touch the subway pole, and we have to Lysol everything.”

Idan’s father, Akiva, who is from Israel and who had his own brush with death when he had a brain tumor removed that left one side of his face paralyzed, now stays at home and watches the boy while Amanda works.

Adding to the fact the one parent is unable to earn an income is that Idan needs a stem cell transplant to have the best chance at a long, healthy life, a surgery that comes with a 10% to 15% mortality rate—and costs a lot of money.

“The longer you wait, the risk involved in not transplanting sooner is getting PCP, which can be fatal too,” Amanda told the Daily News. To have his surgery while young, healthy, infection-free, offers Idan the greatest chance of recovery.

His parents are currently trying to raise $250,000 for Idan’s treatment, including trips to experts across the globe, lost wages, and relocating expenses, and have already received over $90,000 in donations from over 700 people, many from strangers.

“We literally sent the page out to a dozen friends (on Facebook),” Akiva told the Daily News. “Then people were sharing it. The majority of donations are from strangers, they’re coming in from around the world. We don’t feel alone anymore.”

Throughout, the Zablockis have said their love for each other and for their son has kept them strong, and Akiva’s dealings with doctors for his brain tumor has given them wisdom to ask for the best.

“Idan is just remarkable,” Amanda said. “His spirit and his strength — he has no intention of letting this get him down. It’s given us so much strength and hope.””

NBC New York News Channel 4 – Sick Toddler Seeks Stem Cell Transplant

Sick Toddler Seeks Stem Cell Transplant:

 

This toddler is the picture of his health, but his bright eyes are deceiving. He suffers from a rare genetic disorder that attacks his immune system, making it so he can’t be around other children or go outside like regular kids his age. Roseanne Colletti reports on his family’s struggle and hope for his future.

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