Our journey with Sotos Syndrome began on 12/14/2002 when my son Daniel was born. I didn’t know it then, but we were about to go on a very long journey together. Daniel was diagnosed just five days before his first birthday.

Sotos Syndrome is a deletion or mutation on the NSD1 gene, which is a fancy way of saying that Daniel has an overgrowth disorder. Sotos causes OCD, ADHD, hypotonia (low muscle tone), anxiety and developmental delays. It’s a very complicated disorder because it presents differently in each individual and causes a wide-range of challenges. For example, some kids with Sotos will never speak, but those that do tend to talk a lot (which is Daniel’s case).

Early intervention is the key to helping Sotos kids get further in life, so needless to say,  our first three years were a blur!  Most parents mark a child’s first year by the…