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.
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