Your Family and Rare Epilepsy
All rare epilepsy families face challenges—it’s a reality of living with a rare seizure disorder. You know better than anyone that caring for a child with a rare epilepsy requires considerable energy, time, and flexibility. And that has impact on every member of the family—including your VIP sibling. As helpful and involved as they may be with their brother or sister, VIP siblings have needs and concerns of their own. Sometimes, they feel alone.
of siblings reported being unhappy sometimes or a lot of the time.
of adult siblings reported a history of treatment for clinical depression.
of young siblings expressed fear that their sibling might die.
of young siblings reported feeling irritable or grumpy sometimes or a lot of the time.
Many siblings say they have learned to feel compassion and are more understanding of others who are disabled. Other findings showed that siblings can often feel stressed, anxious, or fearful.*
How We Can Help
We’re delighted to offer you these unique resources to inform and encourage your families and your amazing VIP siblings.
Parents & Caregivers Kit
Designed by the rare epilepsy community to help parents and caregivers support their VIP siblings.
VIP Sibling Kits
Available in two age-appropriate versions, these kits are designed especially for VIP siblings to help them cope and celebrate how important they are.
Tools & Resources
Access at your fingertips to all printed components of the Parents & Caregivers Kit, VIP Sibling Kits, and more!