One of the greatest concerns of parents and caregivers in our community is the impact on siblings who have a brother or sister with Dravet syndrome. Their needs are frequently neglected because so much of the parents’ emotional energy and time is focused on the medical care of the sick sibling. And while parents are offered services to assist with the needs of their child with Dravet syndrome, these services are not routinely offered to siblings even though we know that they struggle too. Siblings experience a unique set of emotions and responsibilities and we want to make sure they have the tools to help them with their well-being.
We are excited to announce the launch of a new suite of materials to better support and celebrate siblings of those living with Dravet syndrome, in the United States. Zogenix has worked with DSF, the broader Dravet syndrome community, and a variety of other Dravet and mental health experts to better understand and address the impact of rare epilepsies on caregivers, families as a whole, and siblings. These newly developed materials include information to help parents and caregivers recognize when their child, teen, or young adult may need more support, while reminding siblings how important they are.
The Parent & Caregiver Resource Kit comes in a folder that contains an informational brochure on the impact of Dravet syndrome on siblings; a siblings support guide; a shareable document for family, friends, and others to explain living with Dravet syndrome; and more. The materials in the kit were developed with input from families living with Dravet syndrome and the healthcare providers that serve the Dravet syndrome community.
Two versions of the VIP Siblings Kit have been created, one for sibs ages 4-10 and one for ages 11-18. Each VIP Sibling Kit includes a welcome card, journal, positive affirmation coloring book, stress putty, wristband, and more! Our Super Siblings have always been the inspiration for this project. These kits have been designed to help sibs understand the different feelings and emotions they may be experiencing and to celebrate all that they do.
Register now to receive your kits from DSF when they begin shipping in late July / early August.