Patient Stories

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.

Annabelle Faneca today in 2014Anabelle 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 today in 2014Lola 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 with her uncle in 2014Jenna 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 ShambergerTheo 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.)

 

 

Help Children with Sturge-Weber Syndrome

Helpk Kids with Sturge-Weber Syndrome

Give to Sturge-Weber Syndrome research and help children enjoy fuller lives through improved diagnosis, care, and education.

Learn More Button

Sturge Weber Fundraising Thermometer

Hunter Nelson

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. 

SUBMIT A QUESTION FOR DR. COMI

Sturge-Weber Center Events

Fall 2017:

Tropical Realty Charity Golf Tournament

More information to come!
 

 

Publications

Read inspiring stories, news and updates about the Institute's patient care, research, special education, professional training, and community programs.