My family and I recently visited my closest friend who lives in LA. She has three boys, her youngest Ethan, is a beautiful, warm and loving 5 year old who suffers from a genetic disorder called Angleman Syndrome.  Angelman syndrome is characterized by severe intellectual and developmental disability, sleep disturbance, seizures, jerky movements (especially hand-flapping), frequent laughter or smiling, and usually a happy demeanor.

I was nervous to visit them because while I have heard so much about Ethan I had never had the privilege of meeting him. My visit was nothing of what I expected. I was overwhelmed by how respected, and patient his family members are with him despite his sometimes aggressive behavior and how much I fell in love with him.

It was also evident Ethan is working hard to fit in to our world socially and cognitively. Thanks to his family, he will do better than can be expected of someone with this diagnosis. Meeting Ethan was a gift and a reminder of what life is really about.

There is currently no cure for Angelman Syndrome. To learn more about it, visit www.angelman.org

Karen Haberberg Photography

 

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