Skin Diaries

Born with Sturge-Weber Syndrome and Thriving

By: Julia Terrell, Community Relations Director for The Sturge-Weber Foundation

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 mother 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.

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 wanted to understand her port wine birthmark and the treatments for it, and to learn more about what I needed to look for in the future, like glaucoma and seizures.

I came across The Sturge Weber Foundation and we decided to attend a conference as a family. When we arrived, a larger-than-life lady came out of nowhere, scooped up my baby girl and loved her so tight. My shock turned to joy as she 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.

Thank goodness we had them because when Marissa reached 10-months 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.

It happened again when she was two and a half years old. These seizures were even harder to control. We were sent home again after five days with even more medications. She also developed glaucoma around this time. Everything they said could happen with Sturge-Weber was happening. Luckily, we weren’t alone.

Today, Marissa is 10 years old and is holding steady. She may have more doctors than the average 10-year-old and has a harder time doing the things her friends can do, but her life doesn’t stop every time she gets sick. She’s a champion for positivity and hope and she teaches me something new every day.

We always try to keep Marissa protected. We slow down when she’s sick to reduce the risk of seizures. We also protect Marissa’s skin, especially her birthmark from sunburn as it can burn easier, with clothes and hats from Coolibar. She needs protection all the time, so helping her develop a habit of covering up has been easier than constantly applying sunscreen. With Sturge-Weber Syndrome Marissa has still accomplished so much in her 10 years. She’s gone on vacations, advocated on the hill, participated in dance, sports and music, and she swims every week with her Special Olympics coach. Yes, she will struggle physically because of her syndrome, but she’s not afraid to tell her story and she believes in herself!

Every day, I am so proud of her.   We don’t know what tomorrow will bring for Marissa, but we’re so grateful that we have the blessing of watching the rest of her story unfold.

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

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