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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.

 

Getting ready for a trip to Duke

photo (3)June 9th Update: dan 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!

Idan’s Story goes public on Facebook

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You all know our son Idan, and many of you have followed his adventures on Facebook. Idan now needs your help! Last month, after a 21 day stay in the ICU, Idan was diagnosed with Hyper IgM, a very rare life-threatening genetic disorder that plagues his immune system. We need your help, so he can live a full, long and healthy life: Please see here:https://www.youcaring.com/fundraiseforidan and feel free to Like, Share and pass along. More details and updates to follow. See here for original Facebook post.

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