A diagnosis of Sturge-Weber syndrome can be overwhelming, but, with early diagnosis and treatment, the Hunter Nelson Sturge-Weber Center is helping children with Sturge-Weber live active lives, make friends, excel in school, and do what kids do best: enjoy life.
The Hunter-Nelson Sturge-Weber Center has provided diagnosis, care, and treatment to hundreds of children, equipping families with the information they need to raise a child diagnosed with Sturge-Weber.
We invite you to read these inspiring stories of children who are living with Sturge-Weber syndrome.
Anabelle Faneca’s Story
After testing when she was three months old, doctors told her family that Anabelle was in the clear. But just 10 months later, she suffered her first seizure—when she and her family were away from home. Anabelle was rushed to the nearest hospital, half an hour away. Read more...
Lola Happel’s Story
When she was six months old, Lola was diagnosed with Sturge-Weber syndrome, a blood vessel malformation in the brain, skin, and eye. One of the early signs was the port-wine birthmark that covers Lola’s right eye and eyebrow, extending from her upper lip to her hairline. Read more...
Jenna Heck’s Story
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. Read more...
Theo Shamberger’s Story
The diagnosis was overwhelming at first, but Theo’s pediatrician referred him to Dr. Comi, director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute. Read more...
(Photo credit: Erin Dickson Photography.)
Institute Discovers the Cause of Sturge-Weber
To learn more about our recent discovery View our press coverage
Dr. Comi's Updates
Dr. Comi announces research findings, posts important information, and answers questions of general interest to families living with Sturge-Weber syndrome.
Sturge-Weber Center News
Sturge-Weber Center Events
Tropical Realty Charity Golf Tournament
NOVEMBER 15, 2016
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