05 Jun 2025 by Jennifer Williams

Finding more information and resources on KCNA2

In 2021 Charlie was diagnosed with a rare neurological disorder called KCNA2 which is a rare deformity in his DNA which causes him to have seizures, absent seizures, speech development problems and learning development. He is currently at the learning development of 18 month old because of KCNA2. When Charlie was diagnosed it had only been diagnosed in the last 5 years which means now it has been discovered in the last 9 years. Not much is known about KCNA2 but it does affect people in different ways, symptoms don’t normally develop until a child is 4 or 5 years old and Charlie was diagnosed at 1 which means he has a more severe case of KCNA2. With more research doctors will be able to learn more about the rare neurological disorder and will be able to understand more about it and how it can be treated with the proper treatment and medication but because it is relatively new it’s more a trial and error process of medication. As a parent I’m learning about it as the years go but also trying to navigate my way through on how to be a parent of a child with a rare condition. I haven’t met or know anyone in the last 4 years in this country who has a child with KCNA2 so with more information, resources and research I have hope there will be a better future for children with KCNA2 Share