Story of the Month: Yoav

Yoav’s mother, Gili, shares her son’s moving journey and what Beit Issie Shapiro means to their family…

“I always dreamt of becoming a mother. I had this picture in my head of a perfect family with perfect children.  In my dreams, I ran on the beach with two little children who call me Mommy and we build sand castles together.   In my dreams, my children are healthy, happy and carefree.

At the age of 32,  I gave birth to my eldest daughter, Mika, on my own.  Mika was everything I ever hoped for and dreamed of!  A few years later,  to complete our family unit, I gave birth to Yoav.  From the very beginning, Yoav’s journey was challenging, as if he knew that endless challenges were ahead.  Yoav was diagnosed with Myotonic Dystrophy – a type of muscular dystrophy.  My life, my dreams, my family, my daily routine all changed dramatically.  Our life became a whirlwind of doctors, treatments, diagnoses, committees.

Yoav - Pesach KIT

The greatest relief was when we were accepted for treatment at Beit Issie Shapiro. 

Now, Yoav receives the most dedicated, professional treatment, and boundless love.  I have also experienced a change for the better – I found a new family and partners on my journey.  Being a parent of a child with disabilities means loneliness, fear and helplessness on the one hand, and the need to let go of the dream I used to have on the other.  It requires an ability to cope with the unknown, to learn to enjoy the present and to maintain  a strong spirit. 

And on this rollercoaster ride, I have two children who only want to be children. Two children who want to be happy, loved, and live their lives!  As a mother, Beit Issie Shapiro gives me a sense of belonging to a special community, with warm, professional care, individual and group support, and the ability to create a routine that provides me with a sense of security and tranquility.” 

-Gili, Yoav’s mother

 

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