May Is Williams Syndrome Awareness Month!

Most of you are familiar with the fact that my 16 year old son has Williams Syndrome. It’s an exceptionally intricate genetic syndrome that affects so many things about him. His heart. His mental capabilities. He’s in high school and he doesn’t have the dexterity to manipulate a button. But he loves. Oh, how he loves! I posted about WS … Read More

An Introduction to Williams Syndrome

The Williams Syndrome Association put out a wonderful video that touches on some of the main points of Williams Syndrome. I know so many of the beautiful faces in this video, and it fills me with joy. When my son was first diagnosed with WS, we weren’t in contact with anybody else who had it, and felt horrifically alone. (I … Read More

Frontier Girls and Williams Syndrome

My daughters are members of Frontier Girls, which is similar to Girl Scouts. They earn badges, do activities, and apparently surprise their mother. This summer Niko and I came to two meetings and taught the girls about Williams Syndrome. We shared this short video.  We talked about several of the WS characteristics. The girls asked Niko and I questions. It … Read More

Here’s a Chance to Help Sweet Wes With His Kidney Transplant

Sweet Wes is very dear to me. He has Williams Syndrome like my son, and is in desperate need of a transplant. I applied to be a donor myself, but was unable to be considered because I’m diabetic. There were many, many bitter tears that night. However, they just found a match (YAY!) but need to raise some funds very … Read More