Nancy writes and expresses some of the frustration felt by parents of kids with WS:
"Sometimes I get the impression that people think I am making this entire WS thing up.
All of it.
These days I focus on the positive while being fully aware of WS, and perhaps that is confusing to others. Perhaps that makes Erik's disability disappear to them. Unfortunately, perhaps the hard work we have done to help Erik achieve each milestone and Erik's daily struggles also disappear in their eyes."