Baby Idan's Fight to Live

08/09/2013 11:55 am ET | Updated Oct 05, 2013

Akiva and Amanda Zablocki just celebrated their fourth wedding anniversary, which came weeks after the first birthday of their son, Idan (his name means "era" in Hebrew). What should be a celebratory month is, instead, one filled with great emotional stress and worry over how to pay for a $1 million bone marrow transplant for their son, who suffers from an incredibly rare and life-threatening primary immune deficiency disorder known as Hyper IgM.

For the first eight months of his life, he was perfectly healthy, say Akiva, 33, and Amanda, 28, who live on the Upper West Side of Manhattan. "He even surpassed typical growth milestones," says Akiva proudly. It was only when Idan began experiencing irregular breathing this past April that they received their first clue into a medical mystery that took weeks and a series of tests for doctors at New York-Presbyterian/Weill Cornell Medical Center -- where Idan has been born only months earlier -- to pin down the diagnosis of Hyper IgM.

Hyper IgM is a genetic disorder that affects two in a million people, and severely compromises the ability to withstand typical germs and viruses. For Idan, that quickly rules out daycare, play dates with friends and even time with his many cousins, all of which are now life-threatening to him. Akiva became a stay-at-home dad to care for him, and trips outside to Central Park are limited in both time and scope. Idan must be bathed in filtered water, and when grandparents or aunts and uncles visit, they must first set into a new change of clothes.

Doctors say the best course of action for Idan is a bone marrow transplant, despite the 10-15 percent risk of mortality it carries. A stem cell match came easily enough, for which the Zablockis are grateful, but the journey ahead is daunting.

It's also not completely unfamiliar. Akiva, born in New York but raised in Israel, came to the U.S. to study. As a senior at Columbia University, he was diagnosed with a tumor on his brain stem, and the former IDF soldier now faced a battle of a different kind.

Akiva searched for the best neurosurgeon out there that would be willing to perform the precarious brain surgery by utilizing his vast social network. He quickly became an expert in navigating the the maze of medical jargon, and, along the journey, he witnessed the tremendous complexity and difficulties of the medical system in America.

He returned to Columbia after the successful surgery, its only visible signs a slight droop of the right side of his face and a patch he took to wearing on one eye to prevent double vision. He quickly switched his course of study from finance to public health, and finally had a friend pre-arrange a blind date ("half-blind for me, because I already had the eye patch," he notes wryly) with the beautiful woman he had took note of on campus years earlier: Amanda. For her, it was love at first sight, she says, and Akiva waited seven months into their relationship to tell her that for him, that love at first sight thing had already happened years earlier.

The love and affection Akiva and Amanda both still show for one another is inspiring, as is their determination and use of social media to spread the word about Idan's condition and try and raise the necessary funds for his treatment and surgery.

It was on Facebook where I first saw a post about Idan, as well as a photo of him, and I was immediately struck by his beautiful smile, a smile that, when I reached out to speak to his parents on the phone, they tell me has not been diminished despite Idan's isolation from friends and family, and all the poking and prodding by doctors and specialists.

Amanda, who works as a corporate litigator, will need to take six months of unpaid leave from her job to stay with Akiva and her son in Seattle, where the transplant is scheduled to take place in just a few weeks.

"Our insurance plan will likely only pay about half of the transplant, and rest will be on us," says Amanda. "Because of my unpaid leave, we will be paying out of pocket for the health plan through COBRA, and will probably need to purchase a second plan. There are moments when we feel hopeless, that all of our consultations, trips, and hours spent into the night researching conditioning protocols, complications, and long-term risks might be totally derailed by an inability to afford the care Idan desperately needs. But when we see the thousands of wishes and prayers and words of encouragement on Idan's fundraising and Facebook page, we know we have an army behind us, and that gives us the strength to solider on."

I've never met Idan or his parents personally, but I don't need to in order to be moved enough to care and raise awareness of their struggle to pay for Idan's treatment and surgery. They have lost enough sleep over the health of their son to not have additional hours of financial anguish stolen from them.

I asked the Zablockis what they are most looking forward to following the transplant and months of treatment and vaccinations that Idan must receive following the procedure. It was the only time in our whole conversation that I heard a crack in their voices, which had been filled with purpose and optimism as they spoke to me about their beloved son.

After a minute, Amanda replies that she cannot wait for Idan to be able to play with his cousins again.

And Akiva? "Right before Idan got sick, it was the first nice day of spring -- Idan's first spring ever -- and I took him to park to play in the swing. His face was so joyful," he recalls. "I want him to go on a swing in a park, and I want to see that look again."

Follow Idan's treatment and recovery on Facebook here .