Younger Siblings 

DEE-P Connections: Free Parent & Sibling Kits

Families in the U.S. who are part of the DEE-P Connections Family Community can request free kits to support both parents/caregivers and siblings of children with rare epilepsies.

Parent & Caregiver Kit includes:

• A guide for supporting siblings
• “Love Notes” to share with your kids
• Downloadable family and seizure planning forms

Sibling Kits by Age:

Ages 4–10 Kit:

• “My Sibling Is Special” book
• Coloring journal & mood stickers
• “Rockin’ it / Rough Day” wristband
• Plush star

Ages 11–18 Kit:

• Journal
• “Rockin’ it / Rough Day” wristband
• Door hanger for privacy

Note: Kits are currently available only to families in the U.S., though some materials can be downloaded online via UCB's VIP Sibling resource page. Because shipments are bundled and mailed twice a month, there may be a short delay between placing a request and receiving your kit. Families affected by Dravet, Dup15Q, Doose, CDKL5, LGS, PCDH19, SLC6A1, and TSC are encouraged to request kits through their respective rare disease organizations, which also serve as authorized distributors.

This program is sponsored by UCB and designed to validate and support families navigating life with rare epilepsy.

Adult Siblings

Adult siblings or others who may provide primary or supportive caregiving can download the C.A.R.E. Binder Sibling Companion Guide.

A team of adult siblings developed this Companion Guide to guide you and others through the C.A.R.E. Binder resource with insights and practical tips to support the task of primary and supportive caregiving.

Sponsored by UCB.

Future Planning for Siblings

Siblings are often in line to be the default caregiver for their brother or sister with special needs. This webinar explores what this responsibility means for you and discusses available alternative paths. What can you do now to plan for distributing support effectively and ensuring your loved one receives a person-centered plan that caters to all their needs?

Learn how siblings can be involved in a loving and caring manner while maintaining their own lives, and explore ways in which friends and family can offer supportive assistance. Don’t miss out on valuable insights into future planning for siblings and families.

About our speaker: Kristin Carleton

Before co-founding All Needs Planning, Kristin spent over three years as Vice President of Financial Planning and Investments at James River Wealth Advisors in Midlothian, Virginia. She was a founder and director of the special needs planning organization Eli’s Village in Richmond, Virginia. Kristin also worked extensively in the financial services field as an advisor and a Registered Client Service Assistant, among other roles. She has dedicated her life to building plans to help ensure that every family can enjoy fulfilling and capable lives regardless of their situation.

How Rare Epilepsies Affect Brothers and Sisters: What the “Sibling Voices” Survey Found

Psychosocial Impact on Siblings of Patients with Developmental and Epileptic Encephalopathies by Laurie D. Bailey, Lauren Schwartz, Tracy Dixon-Salazar, Mary Anne Meskis, Bradley S. Galer, Arnold R. Gammaitoni, and Carla Schad. Published in Epilepsy & Behavior, 2020.

When a child has a rare epilepsy like a developmental and epileptic encephalopathy (DEE), it affects the whole family, not just the child, but also their brothers and sisters. This study asked siblings and parents to share how life has been impacted, focusing on emotions, home life, and coping.

Who took the survey?

• 128 parents and 120 siblings, including:
  • Kids ages 9–12
  • Teens ages 13–17
  • Adults who grew up with a sibling with DEE

What did they say?

• Home life was the most impacted area, more than school or friendships.
• The hardest part? Watching their sibling have seizures. This caused worry, fear, and helplessness in more than half of the siblings.
• Many felt responsible, especially adult siblings (63%) and teens (41%).
• Mental health struggles were common:
  • Many siblings reported feeling sad, anxious, or having nightmares, much more than what their parents believed.
  • Up to 62% of siblings said they often felt down or unhappy, but only 25% of parents recognized this.
• There were positives too:
  • Most siblings said they felt more mature, compassionate, and understanding because of their experience.

Why this matters

Siblings often carry invisible stress. Parents and healthcare teams should check in with siblings and offer support when needed, not just assume they’re “fine.” Early support can prevent long-term emotional struggles and help siblings feel seen and heard.