It can be hard for brothers and sisters when a sibling has a chronic illness like Dravet syndrome. Their routines are disrupted, and they worry and wonder what is happening and if their sibling will be alright. Oftentimes parents’ time is limited by the complex needs of the child with Dravet syndrome, and siblings can feel unimportant or neglected. This can be upsetting and frustrating for everyone involved. For Dravet siblings, their whole childhood takes a slightly different turn to most of their peers. It is important that they have the opportunities and tools they need to help them understand and cope with the situation.
To help meet these needs, DSF offers a day camp to connect siblings in-person at our biennial conference and annual Day of Dravet workshops. These opportunities address the needs of siblings, within a nurturing and fun environment. Multidisciplinary recreational activities help them to better understand their surroundings, express their feelings, and meet and bond with peers who are experiencing similar circumstances.
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 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. And now, thanks to continued collaboration with Zogenix, we are able to provide two important new resources to support siblings and their families.