My daughter has Sturge-Weber Syndrome. It’s a rare neurocutaneous disorder affecting 1 in every 20,000-50,000 live births. Complications from SWS can include a port-wine stain birthmark, glaucoma, seizures, stroke-like episodes, weakness, headaches, etc. Quinnlyn has defied the odds and is thriving thanks to an amazing network of family, friends, medical providers, therapists, and educators. She is treated pre-symptomatically for seizures and strokes by Dr. Comi at the Kennedy Krieger Institute in Baltimore, MD. She also receives regular eye checks, laser treatments, occupational therapy, physical therapy, and psychological/emotional therapy. She has good days and bad days but there are so many helping hands there to lift her up. We have struggled to get appointments with specialists covered, especially for out-of-state visits to Dr. Comi and for laser treatments. During the pandemic we were not able to receive all of the necessary treatments as offices closed, appointments went virtual, and providers retired. In 2023 we have been able to get back on track, but we continue to pay out of pocket for many services which add up to thousands of dollars in medical bills.
This November we’ll be running in the Pennsylvania Purple Polka Dot Race at the Cassel Vineyards of Hershey to support the Vascular Birthmarks Foundation. The VBF is an international charitable organization that networks those affected by a vascular birthmark, anomaly, tumor, or syndrome to the appropriate medical professionals for evaluation and treatment. Patients who receive laser treatments on their vascular birthmarks often have purple polka dots (we call them “spotty dotties”) on the treated area for a few weeks. Our family has directly benefited from the VBF’s work through no-cost laser treatments, dental check-ups, attendance at conferences, legislative advocacy, etc.