Sturge-Weber Syndrome Center: Anabelle Faneca’s Story
Physical and occupational therapy at Kennedy Krieger were fun and games for Anabelle Faneca. And who would disagree? She rode a tricycle, counted steps as she climbed them, threw a ball and even did sit ups. She also got to show off her artistic side by coloring and stringing bead necklaces.
The fun and games have paid off, big time. Four—year-old Anabelle shows no lingering consequences of a series of seizures—caused by Sturge-Weber syndrome, a blood vessel malformation in the brain, skin, and eye—that began when she was 13 months old. Graduating from physical and occupational therapy when she was only 2, Anabelle can now jump and splash in the ocean and otherwise keep up with her many playmates.
“No one notices a difference,” says her mom, Julie.
Like most kids with Sturge-Weber, Anabelle was born with a large port-wine birthmark on the side of her face. After testing when she was 3 months old, doctors told her family that she was in the clear. But just ten months later, Anabelle suffered her first seizure—when she and her family were away from home. She was rushed to the nearest hospital, half an hour away.
“That was the worst 30 minutes of my life,” Julie recalls.
The episode was scary. But Anabelle’s father Alan Faneca, a New York Jet guard, has epilepsy, so Julie knew just what to do for her daughter. As a result of the seizure, Anabelle was diagnosed with Sturge-Weber, and Julie began scouring the country for top experts, and traveled to Baltimore to meet with the specialists at the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute.
“Like most families whose child is newly diagnosed, they had many questions. At the Center we take the time needed to address them,” says Dr. Comi, director of the Hunter Nelson Sturge-Weber Center.
Anabelle has been seizure-free for more than a year thanks to a carefully planned medication regimen. Staying healthy is a big concern, since fevers, dehydration, and sleep deprivation can induce seizures. Her birthmark has been lightened considerably with laser treatments, and Anabelle is right on track physically and mentally.
“As Dr. Comi told us, we control Sturge-Weber by controlling the seizures,” her mom says.
In the fall, Anabelle will start preschool and Julie and Alan couldn’t be happier. Now that the seizures are under control, Anabelle and her parents are able to relax and enjoy all the fun and games of childhood.
— by Laura Laing