Carley's Story

Carley is from Slidell, LA and is 16 years old.  She was diagnosed with SWS at the age of 3.  It was difficult to wrap our heads around her diagnosis at first because until she had a seizure, we had never even been aware of Sturge-Weber or been told at birth the possibility of having Sturge-Weber because she has Type 3, which is the brain involvement but no port wine birthmark.  Seizure control up until this last year has been pretty good for Carley.  She maybe had a couple a year or less but this fall we experienced a bout of seizures about once a week for several months.  After trying a few new medicines, we are now back to counting weeks and not days between her seizures and hopefully that will continue.  Putting it all in perspective, I have to say our struggles with Sturge-Weber have been far surpassed by the joy she brings to our family.  She has been a trooper from day 1 and has never let having SWS bring her down. Carley has danced since the age of 2, loves to do local theater and takes art, is involved with her church youth group, and makes mostly A's with a few B's here and there in school.  She's also a terrific big sister and cousin/godmother and loves to spend time with her family and friends.  In her own words "Sometimes having seizures really sucks, but I know mine could be a whole lot worse."  She is our strong, brave girl and we love her. Sturge-Weber is a part of who she is and we wouldn't change a thing.