Tuesday, April 5, 2016

From a father's heart

Shaul's abba, Elad, opens the Rainbow of Music concert with a very
moving personal tribute
A few days ago, we posted (hereabout the fully-sold-out 2016 edition of the Malki Foundation's Rainbow of Music concert at the Jerusalem Theatre. It was a great success.

We mentioned
the opening speech by Elad, the father of a child challenged by CP who spoke of the meaningful ways the Malki Foundation's programs have made a positive difference to his son's progress, was moving and very impactful. In short, a truly memorable evening.
We were asked to share Elad's speech and so we asked him for the text (he spoke in Hebrew, naturally enough). Now, we are proud to post this English translation, below.

Consistent with our concern with the privacy of the families assisted via the Malki Foundation's programs, the names of Elad's children have been disguised and the family's name has been deleted.

Shalom, my name is Elad and I am the father of Tammy, Eliana and Shaul. This evening, I want to tell you about Shaul, the child I think of as the light of my life.

Shaul was born three and a half years ago, a normal and uncomplicated birth. When he was five months old, Shaul was diagnosed with Hemiplegic Cerebral Palsy. That's when we started our own private journey. I believe we are still only at its start but about its first three years and their many and severe ups and downs, I can already tell you something...

At the journey's outset, and as part of making sense of our new situation, we met with a pediatric neurologist who explained to my wife and me what we could expect, the implications and the options in Shaul's case.

I recall thinking two things as we sat through that meeting. One: Can we expect Shaul to catch up cognitively? And two: Is there a chance he will ever walk?

We endured an exhausting, bureaucracy-rich process at the end of which Shaul was admitted to the day-care centre for little children with special needs at Elwyn in Jerusalem. The Elwyn framework includes regular education but also incorporates one-on-one paramedical treatments for each child.

I remember the feeling of frustration at Shaul's lack of progress when he was just a year and a half old. Those long-awaited first steps were not yet on our horizon. We decided to engage a private physiotherapist to come to our home in order to expose Shaul to still more treatment. We wanted the best possible.

At a certain stage, the financial burden of doing this became overwhelming. The realization dawned on us that we would not be able to bear the ongoing costs of private therapies, as much as we were convinced they were needed.

I heard about Keren Malki during my search for support. I also had a clear recollection of being a soldier in the IDF on the day in 2001 that Malka Roth was murdered at the Sbarro restaurant in Jerusalem. From the first moment I read about Keren Malki in detail, I began to feel a special bond.

Keren Malki's insight is that the therapies provided to children via the frameworks of various government institutions, are just not enough. Their relationship with us families includes personal attention, visits from representatives of Keren Malki at our home, and care and concern for Shaul's well-being as if he were the one and only child that Keren Malki supports.

From the midst of that bureaucratic darkness and the unpleasant results that usually accompany it, came a small ray of light. It seemed to be saying “Come, you are not alone. Let us give you a hand and accompany you”.

Our ray of light has been Keren Malki.

Keren Malki was with us from the beginning when our Shaul still was unable to sit up and of course when crawling was not even talked about. Shaul was completely static, lacking even the ability to reach out and grab objects he wanted. The memory of that look of frustration on his face is still with me today.

Thanks to Keren Malki, the rate of Shaul's progress has been nothing short of astronomical. Keren Malki enabled us to receive help from Michal, an amazing physiotherapist who has come into Shaul's life and succeeded, with no compromises, to literally put Shaul onto his own two feet.

Try to imagine this scene: the day I walked in the door from work just as Shaul was finishing a physiotherapy session with Michal. Shaul got up and took two steps towards me. Those were his first two steps ever. And then he fell.

Today, if you look at Shaul you will see an amazing, handsome child who walks unaided, enjoying every step he takes.

I want to say to you ‘Thank You’.

Thank you to Frimet and Arnold Roth for establishing a foundation that gives hope to children and their parents.

Thank you to the community of donors. I cannot think of a better way to increase the good in the world than your support of Keren Malki.

Thank you to the people of Keren Malki for being with us as partners from the start of our journey. Thank you for helping Shaul do what probably seems so basic but is in fact so very significant – to walk.

Thank you for helping hundreds of other families like us in their own personal journey and insisting on being part of it.

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