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Growing up With Akiva

Yael Ehrenpreis Meyer

It’s a letter that no parent should ever have to write. At the shloshim for Akiva Ehrenpreis, his mother, Ahava, penned a letter to a special group who had accompanied Kivi throughout a nearly lifelong battle: I watched you accompany him for the last time on that autumn day exactly 30 days ago … as you had so many times in the past 20 years. On your faces were concentration and concern to protect him, to carry him with so much love… I watched so many loving hands reach out to gently protect him for the

Wednesday, April 04, 2012

akiva“I remember the moment our ninth-grade rebbi told us that our classmate Akiva needed a refuah shleimah and we must daven for him,” recalls Naftoli Verschleisser.

“Even before his diagnosis, we could see that he couldn’t move his head. But as 13-year-old boys, we could not have imagined the reality,” adds another classmate.

Thirteen-year-old Akiva — Kivi, as his family called him — was a clever, delightful, recent bar mitzvah boy. He was a loving son, an affectionate brother, a good student, a popular friend. But Kivi was also suffering from a serious pain in his neck that no one could diagnose. The allergist thought it was an allergy; the chiropractor ascribed it to stress. But then one day, his pediatrician looked into his throat and cast panic-stricken eyes at his waiting parents. “Go for an MRI right away,” was all he said. But as the door closed behind the Ehrenpreis family, he added softly, “That little boy is facing a very big crisis.”

“I remember getting the phone call on Erev Pesach,” recalls his friend Avrumi (his name has been changed on request). “Although my parents explained the severity of the diagnosis, I didn’t fully comprehend the gravity of the situation — and neither did Kivi. He casually explained to me what a benign tumor was and how this was causing his neck pains. He then informed me that he would need major surgery. But his ever-cheerful personality allowed us to spend the rest of the afternoon playing as if nothing serious had happened.”

The MRI had indeed discovered a “benign” tumor. But while not malignant in the classic sense, this aggressive mass was subject to uncontrollable growth at the base of Kivi’s brain stem. Hashgachah had arranged for the right medical team to be close to home, at Manhattan’s Mount Sinai Medical Center. But Kivi’s situation presented a challenge even for the “best in the world.”

Just after Pesach of his 14th year, Kivi endured three operations in one week — 50 hours of surgery in total.

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