Celebrating our Rockin’ LGS Siblings

It can be hard for brothers and sisters when a sibling has a chronic illness like LGS. 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 LGS, leaving siblings feeling unimportant or neglected. This can be upsetting and frustrating for everyone involved. For LGS siblings, their whole childhood takes a slightly different turn from most of their peers. It is important that they have the opportunities and tools they need to understand and cope with the situation.

​Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2019 LGSF Conference in Seattle, WA. Or click here to access the full published research results.

​Thanks to continued collaboration with Zogenix and more than 10 rare epilepsy advocacy groups, we are now able to provide the below important new resources to support siblings and their families.

Caregiver & Sibling VIP Kits

Parent & Caregiver Kit

The Parents & Caregivers Kit was created based on research, guidance, and inspiration from patient organizations in the rare epilepsy community and from Health Care providers 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 a peek at what’s included in this kit-by-mail.

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

  • My Sibling is Special Book
  • Coloring 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 a peek at what’s included in this kit-by-mail.

  • Journal
  • Rockin’ It/Rough Day Wristband
  • Door Hanger

Request a VIP Kit

Resources are available via download here.

Now Available in Spanish

Download Resources

Sibling Spotlight

Browse our LGS Sibling Spotlights by visiting our Personal Stories Page. 

The LGS Foundation endeavors to shine the spotlight on our siblings and who they are, recognizing each sibling’s unique contribution to the world. Click here to share your story and be a part of our sibling spotlights.

This program is proudly sponsored by: