Allison’s Story

My daughter Erin was diagnosed with epilepsy in March of 2019 at the age of 12. It takes two seizures with unexplained cause to get that diagnosis. At that time, her neurologist prescribed a powerful anti-seizure medication. This medication was so powerful, that the dosing had to gradually increase to get to full strength. Even at less than full strength the medication made her feel badly. She would sit on the floor and cry because she just didn’t feel right. The medication also didn’t seem to work for her, because she kept having seizures. Erin passed away in April of sudden unexpected death from Epilepsy (SUDEP), just one month after her diagnosis. Not once did anyone tell me of the dangers of SUDEP, or that there are devices available that can alert you that your child is having a seizure. I wish I would have known more! I have joined the board of the Epilepsy Foundation Nebraska Chapter to help raise awareness of the impacts of this disease and in particular the risk of SUDEP. Please join me in our fight to raise awareness and find a cure!