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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.

ABC Eyewitness News – Upper West Side baby fighting rare immune disorder

Upper West Side baby fighting rare immune disorder – Wednesday, July 03, 2013
By Lucy Yang:

“NEW YORK (WABC) — A nearly 1-year-old boy in Manhattan is fighting for his life.

He has a rare immune system disorder.

A trip to the playground could kill him.

Now, his family is frantically looking for a donor match and is just as frantically trying to raise money to pay for his treatment.

Idan Zablocki is the picture of pure joy. If only he were the picture of health.

“More than anything, I wish that he could play with his cousins, and go to school, and live a normal life,” said Amanda Zablocki, Idan’s mother.

The adorable baby who will turn 1 in a few weeks has a rare immunoglobulin disorder which affects just one in half a million.

It means his body will never be able to protect him against germs or viruses or infections.

This Upper West Side couple found out the hard way.

When he was only eight months old, the start of a simple cold landed Idan in the hospital on a ventilator.

“It was a very big shock, especially because he was so healthy beforehand, we didn’t see this coming at all,” said Akiva Zablocki, Idan’s father.

There is no cure for this genetic disorder and the life expectancy is only 24 years old.

So, the Zablocki’s are on a crusade for a bone marrow transplant. It is risky and expensive, but right now it is their only hope.

“We know that he can survive this,” Amanda Zablocki said.

The Zablocki’s are a courageous couple. Eight years ago, Akiva was diagnosed with a brain tumor he was told was inoperable.

He refused to accept that and found a doctor who successfully removed the tumor.

Now they’re searching for another miracle surgery for their son.

“I think he’ll be OK,” Akiva Zablocki said.

For more information please visit:

The fundraising site: https://www.youcaring.com/fundraiseforidan

Facebook: https://www.facebook.com/HelpFight4Idan”

Upper West Side family raising money for sick son, Idan, years after father had his own brush with death

NY Daily PostIdan’s story was featured today in the NY Daily News in a wonderful article written by Beth Stebner. Here are some highlights:

“Amanda and Akiva Zablocki, who live in Manhattan’s upper West Side, are trying to raise money to cover the medical costs for their infant son, Idan, who was born with a rare immune disorder. Years before, Akiva, 33, underwent a life-threatening brain surgery.”

For one upper West Side family, New York is a dangerous minefield of germs and disease, where trips on the subway are out of the question, and bath time calls for bottled water.

Amanda and Akiva Zablocki must take these precautions for their little son Idan, who was born not even a year ago with a two-in-a-million genetic disorder that ravages his immune system and makes a normal childhood all but impossible.

The two got engaged in Dec. 2008 and were married in 2009 in a Long Island synagogue. Little Idan followed three years later.

Amanda, 28, told the Daily News that everything was wonderful with their son for the first eight months, but soon after that, his breathing became irregular and rapid. “We rushed him to the ER one time, and he was diagnosed with PCP pneumonia, which was made famous in the AIDS era in the 80s,” she explained.

Amanda, Akiva, and Idan Zablocki traveled to North Carolina earlier this month to visit with physicians at Duke, who say that the child needs a stem cell transplant, a costly and dangerous operation.

COURTESY OF ZABLOCKI FAMILY

Left to right: Idan, Akiva and Amanda Zablocki traveled to North Carolina earlier this month to visit with physicians at Duke, who say that the child needs a stem cell transplant, a costly and dangerous operation. The father, Akiva, has battled health demons, too. He wears an eye patch after a brain tumor surgery left him with double vision.

Idan — whose name means 'Era' in Hebrew — spent three weeks in the hospital after his birth. He turns 1 in July.

COURTESY OF ZABLOCKI FAMILY

Idan — whose name means ‘Era’ in Hebrew — spent three weeks in the hospital after his birth. He turns 1 in July.

“It only causes pneumonia in people without healthy immune systems.” Idan was tested for AIDS, but was eventually diagnosed with Hyper IgM. The genetic disorder affects only two in a million.

Living in New York City with a child who cannot be exposed to germs presents its own unique challenges.

“There’s pros and cons,” the mother said. “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.”

Most difficult, she added, was that he cannot be around other children, go to day care, or even meet his many cousins for fear of getting sick. Even other children with the sniffles could send him straight to the emergency room. “It’s very difficult for us,” she said.

Amanda and Akiva Zablocki, a couple living on the upper West Side, are fighting to raise $250,000 to cover their son Idan’s massive medical bills. Their only son was born with a rare genetic condition that makes his immune system extremely weak.

Read more on the NY Daily News. 

 

National IDF (Immune Deficiency Foundation) conference

945278_10100734987086782_1867492044_nJune 28: 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

Update from Duke

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June 22: 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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After a long drive down to Duke, a long day with doctors, and another long drive after, Idan gets his first beach visit for a few minutes before we head back to NYC. I think he liked it.

 

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