Being the parent of a child with Dravet syndrome can be lonely and isolating. It’s easy to feel like no one else “gets it”, that no one else understands our day to day experiences or the challenges we face…
No one else, except another Dravet family.
This past July, in Edmonds, Washington, a small beach community just outside of Seattle, 8 local-ish families attended a Family Gathering. Families first gathered indoors and then moved out to the beach. Children played. Service Dogs were petted. Parents connected. This was all made possible due to a generous grant from the Dravet Syndrome Foundation, thanks to support by Jazz Pharmaceuticals.
Caregiver Connect Grants are available from $100-$300 and can partially or fully fund a local Dravet family gathering or an ongoing Dravet support group in your area. For example, you can plan an event for families, a monthly coffee meet-up for moms, or a dinner for dads. The goal of the grants is to allow our community members to connect and receive support from one another.
Let’s back up a bit- how does one even get started with organizing a Family Gathering? First, I gathered interest in our online FB Parent and Caregiver Support Groups. We have nearly 2 dozen families from Seattle to Tacoma. I knew all wouldn’t be able to make it but it was important to let all know they were invited! I considered locations that were both appealing and easily accessible for most families. In my scouting, I learned of a community center that offered room rentals to non-profits for little to no cost and they just happened to have some upcoming availability for a 3 hour reservation! In your area, you might consider community centers, restaurants with private rooms, parks with picnic shelters, coffee shops, and libraries.
Next, I applied for the Caregiver Connect Grant. I am so grateful that DSF covered the cost of the room rental, doughnuts, waters, and juices. The generous staff at the Downtown Edmonds Starbucks provided coffee. Since many of our children have special diets or food allergies, I encouraged families to BYO picnic lunches.
Finally, we gathered! Several of the families had never met another Dravet Family in person. The oldest attending Dravet patient was 25 years old and the youngest, just 7 months old. Siblings got to meet other siblings and saw they were not alone in what they go through. Parents chatted without fear of judgment. Our children with Dravet syndrome dazzled us with their charm and warm smiles. I, for one, can’t wait to do it again!
It’s really THAT easy! Yes, it does take some coordination and organization, but with DSF’s support with Caregiver Connect Grants, it doesn’t take a financial burden!