Desiree’s Story

My daughter is 21 years old and has generalized epilepsy. She was born with epilepsy her first episode was at nine months when she had her first tonic-clonic seizure. It was heartbreaking for me as her mom to receive this news. The doctors had told me that she will outgrow this at least by the age of 12. Nothing could have been further from the truth. At the age of eight, she had the VNS implanted to help with all the breakthrough tonic-clonic seizures. She has had this replaced four times already. At the age of 12, she was told she has another type of seizure called myoclonic seizures. This was devastating to her. At this doctor’s visit, she was told she will never drive, or even be able to have children. Her seizures are becoming worse with no end in sight. She went from having 8-12 seizures in a month. Now she currently has 13-20+ seizures in a month. No medications help and the VNS is not working as it should. My daughter does not like leaving home as her seizures have occurred outside the home and she gets so emotional and embarrassed when she sees complete strangers stare at her. Having medication-resistant epilepsy is just terrifying for my daughter and myself as being her mom and not being able to do anything about it. I pray for a cure for epilepsy, nothing worse than watching your child go through multiple seizures and feeling helpless. Please let’s find a cure for epilepsy.