Supporting Siblings
A diagnosis of PCDH19 has an impact on the entire family, including the brothers & sisters of those with this rare form of epilepsy. Living with a brother or sister who has a chronic disease can be challenging at times. The seizures themselves can cause fear & anxiety for the siblings, but we also know that our loved ones with PCDH19 often have needs beyond just seizure management that can impact the daily lives of siblings as well. Just as seizure clusters & other related needs can cause disruptions to the lives of those living with PCDH19 & 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 & other extracurricular activities to be interrupted by unexpected seizure clusters or challenging behaviors. Yet, through it all, siblings are resilient and often wise & empathetic beyond their years.
The Alliance wants to ensure that siblings receive the support & attention they need as well. One of the ways we are doing so is by offering the following kits developed by the VIP Sibling Collaboration Team for rare epilepsy families based on research, expertise, and community input.
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Rollins Siblings
"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
Holland Siblings
"Sloan is funny, stubborn, and strong. I admire her because she never gives up."
-Brooks
Joseph 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
Thanks to UCB, we are able to provide these resources absolutely free to families in our community. Follow the links below to complete the order form & receive your kit(s)!
Parents & Caregivers Kit
The Parents & Caregivers Kit was created based on research, guidance, and inspiration from patient organizations in the rare epilepsy community and from HCP and mental health experts specializing in rare seizure disorders. We hope it can offer support and resources for families who are impacted by rare epilepsies.
THIS KIT INCLUDES:
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Guide
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Love Notes
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My Family Is Living with a Rare Epilepsy Form
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VIP Sibling Seizure Plan Form
VIP Sibling Kit
Ages 4-10
Learning about a rare epilepsy isn’t easy for younger siblings. When their brother or sister has a seizure or other emergency, they may feel a little scared or worried. This special VIP Sibling Kit was created to assure them having different emotions is okay and helps celebrate how important and loved they are.
THIS KIT INCLUDES:
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My Sibling Is Special Book
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Coloring Journal
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Mood Stickers
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Rockin' it / Rough Day Wristband
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Plush Star
VIP Sibling Kit
Ages 11-18
Your older VIP siblings may feel like nobody else their age has to cope with the kinds of challenges they do having a brother or sister with a rare epilepsy. Designed to reassure your VIP sibling that their thoughts and feelings are normal, this special VIP Sibling Kit also provides encouragement and insight from other rare epilepsy siblings.
THIS KIT INCLUDES:
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Journal
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Rockin' it / Rough Day Wristband
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Door Hanger
Only registered members of the PCDH19 Facebook Support Group who reside in the U.S. may register to receive a VIP Sibling Kit. If you are unsure if you are a member or would like to become one, you can email dana@pcdh19info.org.
Still wanting to learn more?
You can check out the recorded webinar below that dives deeper into the importance
of these resources and providing support to rare epilepsy siblings!
This program is proudly sponsored by:
The VIP Caregiver & Sibling Kits were made possible in collaboration with the following organizations:
The information collected by the PCDH19 Alliance will not be sold or distributed outside of the Alliance and is used solely to verify the identity of and to communicate with sibling member families as needed. Questions or concerns can be directed to our team.