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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. An infographic summarizing the findings can be found here. 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.

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

  • Guide

  • Love Notes

  • My Family Is Living with a Rare Epilepsy Form (download only)

  • VIP Sibling Seizure Action Plan Form (download only

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

"For families living with a loved one who has LGS, the siblings are truly the
unsung heroes. So often they are asked to make last-minute changes to their plans or
take a back seat to their sibling's medical issues. We are so proud to work across organizations
to recognize these sibling champions
and express gratitude for the amazing human beings they are."

Tracy Dixon-Salazar, PhD
Executive Director, LGS Foundation

If you're under the age of 13, please have a parent or legal guardian complete your VIP Kit order request. 

Resources are available via download here

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. 
Sibling Spotlight 
Tenley age 10 

If I could tell another special needs sibling one thing, it would be to enjoy every moment you have with your special sibling.

Bennett age 6

Coming Soon 

This program is proudly sponsored by:
VIP Caregiver & Siblings Kits made possible by collaboration with: 
The information collected by LGS Foundation will not be sold or distributed outside of the LGS Foundation 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.