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A Beautiful Gift

Shira Yehudit Djlilmand

For children born with hydranencephaly, a rare condition in which all or much of the brain is missing, the prognosis is usually gloomy — death by age one. But then there are children like four-year-old Natan Shai, who are beating all the odds and bringing great joy to their families.

Wednesday, January 25, 2012

natan shaiWhen Hannah Levi first told me about her foster son, Natan Shai, she emailed me the following: “He is now four and has an acute awareness of his family and surroundings, and his smile is simply a ray of sunshine that can warm the coldest heart. He walks in his ‘Hart Walker,’ makes sounds, laughs, and can say ‘Amen’ (this is his only word!). And all this without a brain!”

She didn’t emphasize all the things he couldn’t do — and will probably never do. She focused on his successes, and most of all, his wonderful smile. This is something, she told me, all children with hydranencephaly have.

And so when I went to visit Natan Shai at his home, despite being a little apprehensive of what I should say to a child with almost no brain, I was expecting the smile.

I wasn’t disappointed.

As soon as I walked through the door, I was greeted by a smile that took up Natan Shai’s entire face. And throughout the visit, the smile was often seen, along with delicious giggles that convinced me that what Hannah had claimed was true — that Natan Shai, despite all of his mental and physical disabilities, enjoys life.

“This kid,” Hannah says, “has so many problems, but he has a light in his eyes that tells me he wants to live forever.”


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