The PCDH19 Alliance is a registered non-profit by the Internal Revenue Service under Section 501 (c)(3). We are 100% volunteer run. All the funds we raise go directly to funding research, supporting families, raising awareness, and finding a cure.

Copyright 2019 PCDH19 Alliance

926 A #212 Diablo Ave, Novato, CA 94947

EIN: 45-4020102

July 15, 2019

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Isabella

Isabella was born in November 2011. As a baby she was happy and active with quite a personality. She's a handful, witty and quite sassy. She learned to walk at 9 months, developed normally and met all her milestones ahead of schedule. It was around 3 years of age she started having these "night terrors". Her pediatrician said it was normal but I knew something just wasn't right. They would happen 3/4 nights and last about 10-15 minutes. She wouldn't remember anything the next day. I still think it's related although her neurologist does not. Then suddenly they stopped and two weeks later our world came crashing down and she had her first seizure on June 30, 2017. She was at summer camp and her teacher called out her name with no response. I quickly picked up her and went straight to the doctor and there I witnessed a seizure. It was the most scary thing, to not know how to help her or what exactly was happening. That weekend she was admitted to children's hospital, EEG was abnormal and she was diagnosed with Complex Partial Epilepsy and sent home with medications that didn't work. She would have clusters while sleeping, before her last hospital admission she was having 8/10 per night. Since then she's had a lot of testing and I feel we found our answer rather quickly, genetic testing showed PCDH19 Epilepsy. She inherited from me, an unaffected mother.  She is doing great now currently 4 months seizure free, excelling in Kindergarten and doing swimming and gymnastics. She continues to amaze us in all that she does. She's a fighter.