Ben's Sturge Weber and AVM Journey

We don't mind the questions. We welcome them! We much prefer them to what we have come to call the "stares and glares". Sturge Weber Syndrome (SWS) and portwine stain (PWS) birthmarks are not common, and in the past information has been hard to come by. Now, with the help of several foundations and informational web sites, education about these conditions has become easier to find.

Sturge Weber is a challenging condition to treat. Everyone with Sturge Weber Syndrome has their own unique manisfestation of symptoms and problems. In addition, every one with a portwine stain birthmark responds differently to the laser treatments that are the current treatment of choice in PWS.

Ben was born with a portwine stain that covers the right side of his face and scalp. We didn't know it. The birthmark was so light at birth that we didn't even see it. It grew darker as he grew older, and at the age of 1 we realized that it was not going away. The doctor diagnosed a portwine stain, and in that moment Ben's "blush" became a birthmark.

We dove right in to the world of portwine stains on the internet, and found something called Sturge Weber Syndrome. We asked a doctor about it, and were told that because his birthmark did not involve his forehead we were safe from Sturge Weber. No MRI was needed. We were relieved, happy, and went on our way.

Then one day, almost 2 years later, Sturge Weber Syndrome became a reality for Benjamin and our family. At the same time, we found that Ben had a rare vascular malformation called an arteriovenous fistulas (AVF) in his brain. Just recently we've started yet another journey with Ben as it has been suggested that he may have yet another vascular syndrome called Parkes Weber Syndrome that is characterized by multiple arteriovenous malformations (AVM's). How we got to this point is told in Benjamin's Story. It is a true testament of how we've learned to become a fighting advocate for our child.