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Dealing With Loss

In the past few days, we have learned about several families who are dealing with the worst possible scenarios for individuals with Williams syndrome.  Two sudden deaths and several other potentially devastating hospitalizations have made it impossible for us not to face the most difficult “potential” for those with Williams syndrome.  Our hearts go out to the families of Alan and Alex, and to every family who is watching their child struggle with medical or other types of challenges, and feeling powerless in their efforts to help.

When my son, Ben learned of Alan’s passing last week, he called to tell me and to ask if he “would be able to live a long life”.  It was so heart wrenching to hear him ask, and to try to find the “right words” to use in my response – words that would help alleviate his anxiety.

Facebook is such a double edged sword - at the same time, allowing us to hold up our friends in need of strength and prayers in a way that was never before possible, while causing such anxiety in our young people who depend on Facebook as a lifeline to their friends who are spread across the country.  Suddenly they are not just “connected” with their friends, they are also faced with the reality of the devastating complications that can go hand in hand with Williams syndrome.  My husband and I have been where these families are, and know what it’s like to be faced with terrible odds and praying for a miracle. We were fortunate to have our prayers answered, and we hope for these same miracles for all the families.

But knowing that miracles don't always happen, WS specialist Dr. Karen Levine has helped us write a guideline  that we hope you will find helpful when the time comes to help your child through the loss of a loved one in your family, or in our WSA family.

You can download the article at:

I also hope you will all join me, my dedicated staff, and all of our amazing volunteers as we work to promote awareness, help families personally wherever we can, and support the research that is so critical to helping us find the answers that will make things better in the future.

Terry Monkaba
Executive Director
Williams Syndrome Association