All Resources
Tiny Miracles
Celebrate the successes; remember that in between all the challenges, there are tiny miracles: The other day at my 5...
Finding Hope: Parenting a Child with Life-threatening Epilepsy
On the first morning of our much-anticipated annual family vacation, my 11-year-old daughter Emily learned that a beloved Disney actor...
New Treatments – How Much Longer?
After months – maybe even years – of feeling like a hamster on its exercise wheel chasing a solution to...
A Father’s Day Blessing
First and foremost, before I get started I want to thank the founders of the PCDH19 Alliance for starting this...
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...
Why I Fundraise For The PCDH19 Alliance
I first met Julie Walters during a 10 day stay in the PICU in 2009, when a nurse told me...
Letter of Medical Necessity: What is it? Why do I need it? How do I write it?
First, a little background before we begin; I am a single mother of three. My oldest daughter is 19-years-old and...
Developmental Disabilities and Menstruation
Dr. Mary Elizabeth Christian’s daughter, Grace For some, approaching conversations around puberty and menstruation with your child can feel intimidating,...
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...
My First 18 Months as a PCDH19 Dad
What is PCDH19? I remember asking this question over and over when we received the diagnosis for Louie. I always...
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