It was the start of our 10th year of marriage and my husband and I were going to be a family of three! We were enjoying every moment of our perfect pregnancy and preparing for our first baby to arrive.  I had just turned 37 and I remember the doctor asking me about testing. My response was, “No worries! If we find that our baby girl needs treatment, we will do our homework, get the right specialists and it will be okay.”   On March 23rd, 2009, I got up, got dressed and went to work. I was sitting at my desk when my water broke. Then, 20 hours of labor and a c-section later, Marissa arrived!  The first thing I remember was everyone’s facial expressions while I waited on the other side of the curtain to see my daughter. In a conversation with my mom and husband, the doctor said, “No, the redness won’t go away. We will talk more tomorrow.”   What did that mean? I wanted to see Marissa even more to figure out what they meant. When I looked at her and saw the port wine birthmark and her swollen eye I thought, “She can’t go to school like this. We are going to need help.” I knew our world was going to be different than other new parents, I just didn’t know yet how different. 

The next morning at the crack of dawn, our hospital room became a revolving door. Doctor after doctor arrived. Every doctor that came by left me with the feeling that more was coming, and I needed to prepare. When a dermatologist arrived, I thought, “Wow! They’re taking Marissa’s ‘birthmark’ pretty seriously to send a specialist so soon!” Finally, the pediatrician explained what could, should, or might happen with Marissa… starting with a CAT scan. I was screaming on the inside. “What does all this mean? Yesterday, they said it was just a birthmark and bruising, now my day-old baby needs a CAT scan!”
The results came back. They had been looking for calcifications (whatever that meant!) and luckily didn’t find any. The neurologist explained that she may have  Sturge-Weber Syndrome.   My head was
spinning. I had no idea what that was, but we focused on the good news and started to relax and get ready to take Marissa home.  When we came home we had our first visit with the pediatric glaucoma specialist, neurologist and dermatologist.  We were very fortunate Marissa did not have anything but the birthmark.  As the weeks turned into months, Marissa had check-up after check-up. I started to learn all I could about Sturge- Weber Syndrome.  

I came across The Sturge-Weber Foundation and we decided to attend a conference as a family. We met Karen Ball for the first time. She scooped up Marissa like we were old friends, adored her as if there were no birthmark and she had nothing but love for our Marissa This was the first person that didn’t look at Marissa with any judgment. I never felt so comfortable or free to talk about the syndrome Marissa might have and what we were going through as a family. We’d found a new home and family. 

Thank goodness we had them because when Marissa reached 10-months old our world turned upside down. Marissa cried and moaned all morning, then out of nowhere she vomited, and back-to-back seizures began. It took nearly five days to control the seizures. It was official. We had a Sturge-Weber Syndrome diagnosis and we were sent home with medication, subclinical seizures and a ton of fear.   Soon after she adjusted wonderfully and everything subsided.  

Two and half years old and the seizures came back and this time with a vengeance!   These seizures were even harder to control. We were sent home again after five days with even more medications. This time even more challenging with medicines reacting to each and figuring out was too much medicine and what was seizure.  Right after this we also had a routine follow up under anesthesia with the glaucoma specialist.    She now had glaucoma.   Our worst fears had come true Marissa now had all three parts of Sturge Weber Syndrome.  

Marissa has had some challenging appointments in all areas of the syndrome.   Each time we go to a specialist we take a deep breath and hope that nothing new will present themselves.   We had a scare last May where she came in from playing and had a virus and paralyzed on the left side of her body.   After 10 long days, Physical therapy, Occupational and Vision therapy she is back to herself.   

Today, Marissa is now 12 years old and is holding steady. Her seizures and glaucoma are controlled.  She has had over 42 laser treatments for her birthmark too. She may have more doctors than the average 12-year-old and have a harder time doing the things her friends can do, but her life doesn’t stop for Sturge-Weber Syndrome. She’s a champion for positivity, hope and she teaches us something new everyday.  

We always try to keep Marissa protected. We slow down when she’s sick to reduce the risk of seizures and times of Covid is no different.   With Sturge-Weber Syndrome Marissa has accomplished so much in her 12 years. She’s gone on vacations, advocated on the hill, participated in dance, sports, art, Girl Scouts, swimming 
and music.   Most recently she started horseback riding with her favorite horse Dain and trainer Cameron.   

Yes, she will struggle because of her syndrome, but she’s not afraid to tell her story and believe in herself!   We don’t know what tomorrow will bring for Marissa, but we’re so grateful that we have the blessing of front row seats watching the rest of her story unfold.

We are so THANKFUL for everyone in our village and if you can sponsor us as we start our journey of taking these steps to help the SWF as they have helped us through our journey we will be so grateful!   

To learn more about Sturge-Weber Syndrome and hear more stories about wonderful people like Marissa, please visit sturge-weber.org.

Thank YOU!