Bereavement is a part of life, but in the world of Dravet syndrome, it can be a looming presence. For anyone who has lost their child, it is emotionally devastating and it is natural to go through a range of physical and emotional responses. There is no time limit on grief and how people process and deal with bereavement is unique to the individual.
Living with Dravet syndrome is not an easy journey, and we want all community members to receive meaningful and enduring support throughout this medical journey. In the same way, we want to assure that bereaved families in our community have a strong network and do not grieve alone. We want them to know that they will always be a part of our community and that their loved one will not be forgotten.
Our website offers resources for bereaved families, including a newly formed bereavement support group for parents and a virtual Remembrance Wall. We also work directly with the Miss Foundation, whose mission is to provide counseling, advocacy, research, and education services to families experiencing the death of a child.
If you would like help with bereavement resources or connecting with the Miss Foundation, you can reach out to DSF at any time by completing a Bereavement Contact Form. We are here for you.