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 is now 15 years old...
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 say Louie won the...
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 girls show the “typical autism...
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 that you default to talking about;...
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 is...
Developmental Disabilities and Menstruation
For some, approaching conversations around puberty and menstruation with your child can feel intimidating, but if you add a disability into
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 diagnosed with PCDH19...
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 that another one year old was having similar...
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...
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 group for all of us to...
