Our daughter Paula is a 21 year-old, diagnosed in 2015 with KCNA2 epilepsy.
She’s a beautiful, happy, loving child with severe intellectual disability and intractable epilepsy. We were so grateful in 2015 to finally have a diagnosis, and we’re so happy to now discover this community of people on a similar journey with their own loved ones.
Paula ‘s been on innumerable anticonvulsants that generally wear off in effectiveness. She was on the Ketogenic diet for epilepsy for 19 years, has a VNS implant, and still has seizures.