We received the shock of our lives when Olivia started having seizures at 15 months old. After a week at Primary Children's hospital with hundreds of seizures, she was sent home on 2 medications and diagnosed with epilepsy. A year later we did genetic testing and found out the cause: a pathogenic mutation on the pcdh19 gene. Her neurologist told us about the allliance and they have been a rock for me and so many other parents to ask questions and get support. They also fund critical research in hopes for a cure.
While Olivia's seizures are currently controlled and we are so grateful, we have learned the seizures can come back at any given moment. Some people with Pcdh19 epilepsy suffer from debilitating drug resistant seizures and constant hospitalizations. We have also learned through the Alliance that many individuals with Pcdh19 epilepsy share common mental health symptoms/diagnoses including autism, anxiety, OCD, and behavioral challenges.
I have hope for a cure. Please help me raise funds towards a cure for this devastating condition.