Silas' Story

Silas was diagnosed with Sturge-Weber Syndrome on May 8, 2013, the same day researchers announced the discovery of the gene mutation that causes SWS. He was 11 months and we had never even heard of SWS prior to his seizure a month earlier. He has a very faint PWS on his forehead that we were told was a stork bite and would likely fade with age.  While you can often never really understand why some things happen in life, his diagnosis, on this day felt very much like a calling for us to become active members in the Sturge-Weber community.  We have been very fortunate to have faced our struggles in the early stages of diagnosis. He is now a healthy, almost 5 year old, who loves superheroes and music.

This March, we celebrated 3 years seizure free (his seizures are controlled by medicine). His eyes have not been affected and his development is on par for his age (he has a healthy twin sister and is at same levels as she is) and will enter Kindergarten in the fall. He is so loving and social...We always joke that Silas is going to be homecoming king because he has this personality that immediately draws everyone around him in. There is not a day that passes that I don't look at him in awe of all he's accomplished despite this diagnosis, which brought us so much uncertainty 4 years ago.  Though the worry never goes away, we are very blessed to have this happy, healthy boy in our lives and will continue to push for advancement in research and care for our little guy and all those affected with SWS.