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 and is the youngest of five girls.

We all have individual experiences with Norah’s disability, and we have all been affected differently because of it. Being just two years older than her, this life is all I know. Watching your sibling struggle and being scared for them is something that not many people can understand. Being the sibling is hard, but I wouldn’t want Norah to be any different. Even though this diagnosis has brought on many hardships, we have had lots of happiness as well. Norah’s Epilepsy is simply just another reason our family is special.

-Lucy

Being Norah’s oldest sister, I have experienced how this diagnosis can change a whole family’s life. Epilepsy is something that is scary to not only watch your little sister live with, but watch your parents and other siblings deal with. Our lives were changed with Norah’s diagnosis at such a young age, and the unknown of what that could mean to our family and our future. Norah was mostly in the hospital for the first few years of her life, and has had to take multiple trips there throughout the years. She is the strongest and bravest girl I know. She shows that by never giving up, or letting her diagnosis hold her back from the things she loves and the dreams she has. Norah shows us every day how important it is to be yourself, and take each day one at a time.

-Shirley

The Keigher Siblings