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June 2013

The power of community…the strength of family

When Ben was diagnosed with Williams syndrome 27 years ago, Gary and I were alone in Ben’s hospital room.  There were no family close by, there was no internet to consult.  We were provided with a 20+ year old medical paper, and the news that our lives and that of our 6 week old son would be immeasurably different than we had thought just a few days earlier.

In the days and weeks that followed we would scour libraries for information with very little success, and speak to therapists and specialists who had little, if any knowledge of Williams.  And then, quite by chance, we learned that there was another family in our area who had a child with Williams syndrome.  We called the family, and with that call, our lives were set on a better course.  We were no longer completely alone.  Not only did we speak with a family who knew what we were going through, we learned about the Williams Syndrome Association – a small but growing community of families who had a child with WS and professionals invested in learning more about this rare disorder.  It was a bit like being “found” after days of being hopelessly lost in a very strange place.  Less than a month after the call, Ben was the youngest attendee at the WSA’s 2nd convention – a weekend meeting held in Cincinnati, Ohio.