Grief is a complicated, heavy, and big emotion. And it is never so heavy as when someone we love dies. Especially when that death is the death of a child.
When a death happens we move into a phase of acute grief – grief that is typically tied to a specific event. When we are in that phase of grief, it is common to feel alone and isolated. But, we at DSF, want you to know you are not alone.
To better support our bereaved families, DSF has curated a collection of programs and resources:
Mason’s Movement is an organization that was started by the Langford family in memory of their son Mason, who had Dravet syndrome. This organization shares their experiences by providing comfort items and encouragement to families and siblings.
The MISS Foundation was organized by Joanne Cacciatore, PhD. Her passion is supporting those of all walks of life and backgrounds with the support of dealing with acute grief. In the process the MISS Foundation has trained thousands of grief specialists to serve as therapists and counselors on their grief journey. DSF has forged a relationship with MISS and can help to connect you with counselors in your area.
Joanne has also written a book called Bearing the Unbearable. This book helps to support anyone going through grief in any stage. It also helps to introduce some of the philosophies of the MISS Foundation.
Bereaved Parents Facebook Support Group
DSF, in partnership with DS UK, hosts a Facebook support group specifically for Dravet parents and caregivers that have lost a child with Dravet. This group is where bereaved caregivers can share stories, laughs, tears, and memories with others who intimately know and understand.
A parent can submit their loved one’s name and image to be added to the Virtual Remembrance Wall on the DSF website.
Remembrance Day Slideshow – June 15th
Each year we honor those with Dravet syndrome that have passed. We do this by sharing a slideshow of all the names and faces (if provided) of ones we have lost. This special tribute is shared at 12 pm Eastern time on June 15th on our public profile page on Facebook.
Other resources available on our website
In addition to these specific programs, we have also collected other resources that may be helpful to you and your family.
- Dougy Center
- PAME (Partners Against Mortality in Epilepsy)
- Normal Broken, written by Kelly Cervantes
These programs and more can be viewed on our website. If you would like to connect with DSF staff regarding bereavement support please either complete this form or email Family Network Coordinator Austin Watson at austin@dravetfoundation.org
Grief is messy. But there are two things to remember about grief: 1) The grief journey is not linear. 2) No two grief journeys are the same. As you experience grief, we hope that you will be gentle with yourself and reach out and pull your community close.
DSF is committed to helping you in whatever way that we can. You, your loved one, and your family will always be a vital part of our Dravet community. No matter where you are in your grief journey, never hesitate to reach out.
