Idan’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.
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.
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.
Read more on the NY Daily News.