PCDH19 Related Epilepsy
“Like many parents, we were on cloud nine the first months of our daughter Violet’s life. Our hearts melted at her first smile, laugh, and words. We had just sent out the invitations to her first birthday party when Violet had another first that was not part of our dream for her: her first seizure. A 911 call introduced us to a nightmare we would learn to call PCDH19 Epilepsy.
In an effort to control the seizures, our daughter has tried at least a dozen medications, some of which inhibit her ability to learn, speak, sweat, and walk. Some even dull her bright personality. Since that first seizure, she has spent too much of her young life in Intensive Care Units, ambulances, and emergency rooms.
Despite the challenges our daughter faces every day, she loves life. She spends time at the park and beach, works hard in school, loves playing with her little brother, and making new friends. As her parents, we make the absolute best of the time she is healthy and happy, and we hope for and work towards a day when our daughter can live without seizures.”