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.