Our daughter Hadley is 6 months old. When she was born her right eye was swollen shut and had red markings on her eye lid and forehead, we were told it was just bruising and the way she was positioned. The next day a neonatal doctor informed us about Sturge Weber Syndrome and that her eye could possibly be bulging due to glaucoma. Hadley was 3 days old when she arrived at Cincinnati Children’s Hospital, I will never forget sobbing in the exam chair as her ophthalmologist tried examining her swollen eye. He believed that she had a hemangioma in her eyelid and her eye looked healthy with slight pressure. Days later she was in surgery for a biopsy and about 2 months ago she received an orbitonomy to remove as much of the mass as they could. Hadley has a rare vascular tumor that expanded from her eyelid all the way to her skull along with the most beautiful port wine stain. She continues to be monitored by doctors and will start her laser treatments soon. As of today she does not have a clear diagnosis.
Before Hadley I had never seen or noticed a port wine stain nor heard of the term hemangioma. I currently teach first grade and taught special education prior. I received my Masters Degree in moderate and severe disabilities, not once heard about Sturge Weber Syndrome. My world has changed for the better and am blessed with the sweetest girl. The first few months with Hadley I felt alone and afraid. I am forever grateful for this foundation which has supported my family and I in so many ways.