Have you struggled with how to manage the relationships between your medically complex children and their more typically developing siblings? Are you a sibling to someone with severe epilepsy and want to hear how others have found ways to build stronger relationships?
This is a recording of the DEE-P Connections webinar from June 3, 2020, which was planned in coordination with all panelists.
This webinar was a conversation about the challenges and joys of DEE-sibling relationships—with a wide range of siblings, from a 4yo, a pre-teen, a teenager and an adult—sharing their experiences.
Laura S. Lubbers – sister to Ellyn and Chief Scientific Officer at Citizens United for Research in Epilepsy (CURE)
Aria Moss – sister to Evan and whose family started and runs Seizure Tracker
Lily Howard – sister to Harper who passed away in 2016 and whose family started and runs Hope4Harper CDKL5
“I talked a lot about how life was good with Harper because I genuinely feel that I have had a great life. But there were a lot of sacrifices made, by everyone, because of Harper. Even though my life was different, sheltered, and isolating, I do not resent anyone for the struggles we endured. I know my parents worry about my feelings. They feel guilt about what I missed out on, but I do not see it as a bad thing. I did not really want to bring up and reflect on those negatives to make parents more worried about their non-special needs children. Yes, we have a different life. Yes we struggle but over all we know we are not forgotten and we are okay. At the end of the day we still love you and our life has taught us what many may never learn. ”— Lily Howard – 12 years old and sister to Harper, who passed away from CDKL5 Deficiency Disorder in 2016
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