Month: July 2013

Idan's Blog, In The News

Idan on CBS New York News

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11-Month-Old Boy Needs Risky Bone Marrow Transplant To Save His Life

NEW YORK (CBSNewYork) — An Upper West Side family has been left with a tough decision. Their 11-month-old son needs a risky bone marrow transplant, the only possible cure for a rare genetic condition they only recently discovered.

As CBS 2’s Emily Smith reported Tuesday, Amanda and Akiva Zablocki have a little bouncing boy named Idon, but he is not healthy.

He was born with a 2 in a million genetic disorder that wreaks havoc on his immune system – something they only found out about in May when he came down with a cold, followed by pneumonia.

“In his first eight months, he reached every single mark. The doctors thought he was doing great. He really was a very healthy baby,” Akiva Zablocki said, “and that’s when we discovered only at the 81/2-month mark.”

The genetic disorder is known as hyper IgM. The condition all but wipes out the immune system.

A child with hyper IgM cannot go on a subway, train or bus and is not able to interact with other kids.

At their Upper West Side apartment, everyone – including CBS 2’s Smith and her crew — had to change into newly-washed clothes the Zablockis provided at the door. No one may wear shoes, or touch the baby’s toys.

Since Smith and her photographer were among the first to come into the home other than family members, they were also asked to stay three feet from baby Idon.

To save Idon’s life, the couple has been fighting to raise $250,000 to cover medical bills for an estimated $1 million bone marrow transplant. They have insurance, but certain portions of treatment are not covered.

While the transplant is a cure, it has a 10 to 15 percent mortality rate.

‘”When he’s 14, to turn around and say: ‘I have liver cancer. You had an opportunity to cure me. Why didn’t you take that chance?’” Amanda Zablocki said.

The family is no stranger to illness. Akiva Zablocki had a brain tumor operation several years ago. But for now, the family is just trying to live in the moment.

“I think that’s the only fair thing for him, which is to make sure that he feels happy and he’s not scared,” Amanda Zablocki said.

But a routine that includes a hospital-grade air purifier, bathing Idon in bottled water, and feeding him foods without added water to avoid bacteria all serves as daily reminders that their baby is fighting a potentially fatal battle.

Neither parent is a donor match for Idon. There are three matches who remain anonymous.

The procedure will likely be done this summer once the family makes a decision on where to do it.

 

In The News

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

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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.