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The Teacher I never Expected: Meeting Benji

  • Galit
  • Nov 26, 2025
  • 1 min read

Updated: Feb 20

Our son, Benjamin (“Benji”) was born and immediately whisked to intensive care with numerous medical problems. Shortly after he was born, the diagnosis came: 22q13 deletion syndrome (now known as Phelan McDermid syndrome); a disorder so rare that only a few dozen cases had been reported worldwide. The geneticist's words were prophetic: "Take him home, love him, he will write his own story."
Our son, Benjamin (“Benji”) was born and immediately whisked to intensive care with numerous medical problems. Shortly after he was born, the diagnosis came: 22q13 deletion syndrome (now known as Phelan McDermid syndrome); a disorder so rare that only a few dozen cases had been reported worldwide. The geneticist's words were prophetic: "Take him home, love him, he will write his own story."

Where It All Began: Our Journey Starts Here

 

The first year was constant medical crises and appointments, feeding struggles, and sleepless nights. Benji couldn't hold his head up in a stroller at a year old. But while professionals painted pictures of severe limitations, I saw a child with engaging eyes and a heart-melting smile who seemed to clearly understand everything around him.


Continued...







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