Rare Disease Day: Williams Syndrome

Today is #rarediseaseday. My sweet Niko has the double whammy of Williams Syndrome and autism. Williams is a fascinating, intricate syndrome accompanied by physical and cognitive challenges, but also joy, curiosity, and so much love. We are better people and a better family because of Niko. He’s a sweet, loving, curious 20-year-old boy. He still wants to sit on my … Read More

Today is Rare Disease Day. Williams Syndrome.

My sweet Niko has Williams Syndrome and autism. Williams Syndrome is an intricate syndrome caused by the deletion of the elastin gene on the seventh chromosome. This spontaneous deletion on one tiny gene has the ability to dramatically change our lives. He’s a sweet, loving, curious 19-year-old boy. He still wants to sit on my lap. He asks me to … Read More

May is Williams Syndrome Awareness Month

Most of you are familiar with the fact that my 11 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 going to middle school next year and he doesn’t have the dexterity to manipulate a button. But he loves. Oh, how he loves! I … Read More