All Resources
A hike from the heart – PCDH19 Life
This summer, my husband and I took our kids on a road trip through Utah and Colorado. We drove through...
Transitioning to Adulthood With PCDH19 Epilepsy
When your child has significant health & support needs, every approaching transition can feel daunting, but the transition to adulthood...
My Perspective: Growing Up With PCDH19 Epilepsy
Many people think that having a seizure disorder like PCDH19 merely means that you occasionally have seizures. However, the reality...
Because of Elliot: An Adult Sibling’s Reflection on Growing up with a Brother Who Has a Rare Disease
When you are trying to get to know someone new on a deeper level, there are probably a few things...
Through Claire’s Eyes: A Woman’s Thoughts on Living with Autism and PCDH19 Epilepsy
April is autism acceptance month. In this blog today I want parents of girls to be aware that not all...
Standing by our Sister: The Sibling Impact of PCDH19
We can’t imagine our family’s life without Norah. Norah was diagnosed with PCDH19 Epilepsy at only 9 months old. She...
Violet’s Story
On July 23rd 2008 our daughter, Violet Millay was born. The next 11 months we lived our dream of being...
Tate’s Story
Tate had his first seizure at 9 months old in January 2010. He just had a tonic-clonic out of the...
Sloan’s Story
Sloan’s first seizure occurred when she was 8 months old. On November 27, 2013, she was sleeping in bed beside...
Siena and Lily’s Story
My name is Alison and I’m mom to Siena and Lily, two precious girls living with PCDH19. Siena is now...
Sarah’s Story
Saturday December 20, 2003 started out like any other normal Saturday. Sarah was having a typical morning sitting up in...
Remy’s Story
Remy was diagnosed with PCDH19 Epilepsy in December of 2014. She recently spent 3 weeks in the ICU due to...
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