OUR STORIES

Everyone Affected by PCDH19 Epilepsy Has a Different Story

Some children’s seizures cluster more than once a week, others cluster far less frequently. Some have longer seizures, some shorter. Many start having seizures before they are a year or two old. Some gain seizure control with medication or the onset of puberty, while others do not. Some children are also diagnosed with Autism Spectrum Disorder, and/or can exhibit behavioral and psychological challenges, while others are mentally and cognitively typical.
What they all seem to have in common is their determination and strength. Please take some time to get to know them through the words of their loved ones.
DOES YOUR CHILD HAVE PCDH19 EPILEPSY? SUBMIT YOUR STORY

Read Our Stories

AMANDA’S STORY
AMBER’S STORY
ANN’S STORY
BEATRICE’S STORY
CAMILLE’S STORY
ELLA’S STORY
ESME’S STORY
FAITH’S STORY
FILIPA’S STORY
FREYA’S STORY
GIORGIA’S STORY
ISABEL’S STORY
JANE’S STORY
KATE’S STORY
KAYLA’S STORY
LEXI’S STORY
MAEGAN’S STORY
PEGAN’S STORY
OLIVIA’S STORY
REMY’S STORY
SARAH’S STORY
SLOAN’S STORY
TATE’S STORY
VIOLET’S STORY

Watch Our Videos

PCDH19 EPILEPSY STORIES

THANK YOU FROM THE PCDH19 ALLIANCE

VIEW ALL OUR VIDEOS ON OUR YOUTUBE CHANNEL

Stellar Siblings

We believe that PCDH19 siblings have an important story to tell. A diagnosis of PCDH19 Epilepsy is life-altering – for the whole family. From time to time we hear stories about the amazing siblings who love our affected children, and we would like to get to know them better.
Our desire is twofold: first to support siblings by recognizing the unique challenges they face and expressing our admiration for the important role they play; and second to give them a voice so that in honoring them we can continue to raise awareness of the effects of PCDH19 on families.
Showing empathy and awareness beyond their years, working diligently at school despite epilepsy-related stressors, organizing a fundraising event: these are just some of the ways we’ve heard that our stellar siblings step up to the challenge. So whatever “stellar” looks like at your house, keep an eye out for those moments when your child really shines, and together let’s shine a spotlight on your stellar sibling!
Do you know a stellar sibling? Email your child’s name to jennifer@pcdh19info.org and we will contact you. Stellar Siblings will be featured on the PCDH19info.org website and in the PCDH19 Alliance’s newsletter and social media!

You have the power to make a difference! Get involved by hosting a fundraiser, attending a conference, donating, or volunteering your skills.

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