All Resources
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...
Pegan’s Story
Pegan Wade is my beautiful 6 year old daughter. She was born on 8.7.08. She began having seizures when she...
Olivia’s Story
Olivia Rose was born in October 2006. A sweet, precious daughter who captured our hearts. The little girl we dreamed...
Maegan’s Story
This was the start of my being sick all the time with recurrent pneumonia, UTI’s, cold sores, GI issues, and...
Louie’s Story
Louie was born on October 9, 2018. He was our miracle baby and made our family complete. He forever changed...
Lexi’s Story
We referred to Lexi as our mystery girl for 12 years, before she was diagnosed with PCDH19 and Cornelia de...
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