Marissa's Story

Marissa was a gift from God to us!!   The first few weeks were a whirlwind with doctors of all kinds!!   We were fortunate to first meet Anne Howard who told us that we had to come to our first Conference in NJ.   At that time, we met Karen Ball for the first time and she scooped up our Marissa and we knew we had come home.   Since then we have had multiple sets of cluster seizures and glaucoma.   She has had struggles with weakness and difficulty at school too.   She has not let it hold her back.   Marissa attends a Catholic School with her peers.   She dances twice a week, swimming once a week, she participates in Girl Scouts and the Choir at school.  She just started Karate and Music Therapy!!   If you met Marissa today she would give you a big hug and tell you all about her activities.   We didn’t start out on this journey wanting Sturge Weber Syndrome but what we found is that we love our new family in the Sturge Weber World.   We love all the time we spend together even if it is at appointments, therapy and the like.   We get to do Awareness Days where we meet new people and Marissa has come into her own to tell her own story.   She has taught so much and is so resilient everyday.   We are so lucky to be a part of this world and can’t imagine where our journey is going to go but we know we will get there.   When the days get rough Marissa always says to us “You know It will be OK” and she will give you one of her famous hugs!!   I often wonder how can someone so little be so wise beyond her years!!  We do know it will be ok!!