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.
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THANK YOU FROM THE PCDH19 ALLIANCE
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 email@example.com 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.