Most moms carry around a favorite toy or blanket to keep their children happy. But Ida Heck carries something a little different: a bag of medications. The medications are for her daughter Jenna. Along with the daily prescriptions Jenna takes, these drugs are on hand in case she has a seizure.

Jenna has Sturge-Weber syndrome, a blood vessel malformation in the brain, skin, and eye, and the precautions and treatments for the disorder have had to fit into a family already busy with school and extra-curricular activities. After diagnosing Jenna when she was just weeks old, her pediatrician did some research and recommended the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute. With the support of the Center’s team, the Hecks have been able to find a workable balance.

“Jenna is a feisty, attitude-filled four year old,” her mother says. “But she’s good about going to the doctor and taking her medications.”

Jenna’s willingness to follow her medical regime is crucial. Jenna has glaucoma, which is treated with daily eye drops. When she was six weeks old, she had surgery to relieve pressure in one eye, but unfortunately the pressure has returned, and she had surgery again this spring. Jenna still gets laser treatments for her port-wine birthmark, a tell-tale sign that often indicates Sturge-Weber. Occupational therapy has helped her develop hand-eye coordination, and she shows no opposite-side body weakness, another typical symptom. And developmentally, she’s pretty much on target.

“It can be challenging for families to adjust to the medical and therapeutic routines necessary to treat Sturge-Weber,” says Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Center. “Here at the Center, we’re dedicated to helping families establish those schedules and integrate them into their everyday lives.”

In fact, Jenna has a very busy play date schedule and is quite popular with her classmates. She can’t get enough of school and does her homework along side her siblings each afternoon and is always there to cheer them on at their soccer games. Ida’s even hoping Jenna will get to play next fall.

— by Laura Laing