Sibling Resources
Resources for Siblings of People with PCHD19
A diagnosis of PCDH19 has an impact on the entire family, including the brothers and sisters of those with this rare form of epilepsy. The Alliance wants to ensure that siblings receive the support and attention they need as well.
The PCHD19 Sibling Experience
Living with a brother or sister who has a chronic disease can be challenging at times. The seizures themselves can cause fear and anxiety for the siblings, and we know that our loved ones with PCDH19 often have needs that can impact the daily lives of siblings as well.
Just as seizure clusters and other related needs can cause disruptions to the lives of those living with PCDH19 and their caregivers, it does for siblings too. It is not uncommon for typical childhood events such as family vacations, hanging out with friends, or sports and other extracurricular activities to be interrupted by unexpected seizure clusters or challenging behaviors. Yet, through it all, siblings are resilient and often wise and empathetic beyond their years.
“If it wasn’t for Louie we wouldn’t be who we are today. It is hard and it is scary to watch your brother go through everything he has but his braveness has taught us so much and has made us really strong. We are strong for him. Louie is perfect and we wouldn’t change anything about him! It’s a tough road but so are we! Hope will get us through this!”
-Rollins Siblings
“While it may be difficult to look past the difficulties PCDH19 causes, I believe siblings can gain an intimate perspective into the positive attributes that PCDH19 kids have. Growing up with Cathy, I learned to be strong and compassionate through tough times and actively sought to see her kindness and happiness. As a community, we need to remain hopeful and supportive to help those affected by PCDH19 make their mark on the world.”
– Brigit
VIP Sibling Kits
Our VIP Sibling Kits are designed to support brothers and sisters as they navigate their own emotions, questions, and experiences. Each kit includes age-appropriate tools and activities to help siblings feel seen, valued, and better equipped to understand what their family is going through. It’s one small way we honor the important role they play and remind them they are Very Important People, too.
Kits were developed by the VIP Sibling Collaboration Team for rare epilepsy families based on research, expertise, and community input. Thanks to UCB, we are able to provide these resources absolutely free to families in our community.
PCDH19 Sibling Stories & Resources
Read stories from PCDH19 siblings. You can also share your story.
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...
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...
How can we help?
If you are a sibling or have questions about supporting the siblings of people with PCDH19, please don’t hesitate to reach out.