VIP Siblings!

Get Your VIP Caregiver & Sibling Kits Today

It can be hard for brothers and sisters when a sibling has a chronic illness like STXBP1-related disorder. Their routines are disrupted, and they worry and wonder what is happening and if their sibling will be alright. Often parents’ time is limited by the complex needs of the child with STXBP1-related disorder, and siblings can feel unimportant or neglected. This can be upsetting and frustrating for everyone involved. For STXBP1 siblings, their whole childhood takes a slightly different turn to most of their peers. And, as helpful and involved as they may be with their brother or sister, STXBP1 siblings have needs and concerns of their own. It is important that they have the opportunities and tools they need to help them understand and cope with the situation.

Thanks to collaboration with UCB and more than 10 rare epilepsy advocacy groups, we are now able to provide the below important resources to support VIP Siblings and their families.

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 healthcare provider 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. Here’s what’s included in this kit-by-mail.

  • Guide

  • Love Notes

  • My Family Is Living with a Rare Epilepsy Form (available for download only at Tools & Resources)

  • VIP Sibling Seizure Plan Form (available for download only at Tools & Resources)

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 that having different emotions is okay and helps celebrate how important and loved they are. Here’s what’s included in this kit-by-mail.

  • My Sibling is Special Book

  • Coloring Journal

  • Family Journal

  • Mood Stickers

  • Rockin’ It / Rough Day Wristband

  • Plush Star

VIP Sibling Kit (ages 11-18)

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. Here’s what’s included in this kit-by-mail.

  • Sibling Journal

  • Family Journal

  • Rockin’ It / Rough Day Wristband

  • Door Hanger

VIP Sibling Kits are made available to families at no charge, thanks to the support of our partners at: