Diagnosed with KCNA2 at age 16
My daughter Amber is 23 years old. She started had her first seizure at the age of six. However, looking back I now know she was having absence seizures prior to that time. She is still in and out of the hospital with uncontrolled seizures and tried has tried on many medications to control seizures.
She was not diagnosed with KCNA2 until she was 16 and has a more severe variant. She has multiple types of seizures and as she has grown older, she has a majority of them in her sleep on a nightly basis. Amber has a heart of gold and as the condition has progressed, she is one of the bravest young women I know.
My hope is that through awareness all children with rare epilepsies will be able to have the opportunity to partake in life in such way that brings them joy and wellbeing.
How she’s doing now
She continues to try new therapies and is about to have deep brain stimulation (DBS) surgery in hopes of some relief from the nonstop seizures during sleep. She enjoys drawing, audiobooks, going to the movies and hanging out with her family. She remains open to new therapies and never stops fighting for improvement and stability.