Taking care of yourself is part of caregiving
Taking care of yourself is part of caregivingCaring for someone with a DEE means managing a lot of moving parts. Knowing where to find support and resources can make a real difference—for you and for your family.
It’s common for someone caring for a person with a DEE (Developmental and Epileptic Encephalopathies) to put their own needs last. But your health and well-being are important. Caring for yourself helps you stay strong for your loved one—and it's not something you have to figure out alone. Here, you’ll find videos, tools, resources, and articles created just for caregivers like you. Whether you’re looking for advice, emotional support, or just a reminder that you’re not alone, we’re here to help.
In this video we were joined by Amanda Griffith-Atkins (Licensed Marriage & Family Therapist and PWS Mom) and Anne Thompson-Heller (Licensed Marriage & Family Therapist and mom to Jordan who has an undiagnosed DEE). They unpacked the realities of working on your marriage while parenting a child with disabilities and medical complexities.
They covered topics that sometimes feel impossible to repair: conflict, communication, resentment, and intimacy. We hope this webinar will encourage you!
In this conversation, you will meet Blyth Lord - mom to Cameron who had a genetic disorder and passed away at the age of 2. She is the Founder of Courageous Parents Network as well as NeuroJourney, an incredible resource which guides families of children with severe neurological impairments (SNI) through the many stages we must confront when caring for our children. NeuroJourney is a comprehensive tool built with both caregivers and professionals, to help families navigate the evolving needs of our child as well as the complex decisions that we may have to face.
This is a conversation between Blyth, DEE-P Connections Co-Founder and DEE mom, Gabi Conecker and Chrissy Salley - a Pediatric Psychologist working with the Courageous Parents Network and NeuroJourney.
Caregiver Connect is a supportive program created by the Dravet Syndrome Foundation to help families manage the emotional and physical challenges of caring for a child with rare epilepsy. Developed in collaboration with experts at The Children's Hospital of Philadelphia and Nemours Children's Hospital, the modules offer on-demand videos and tip sheets focused on stress management, burnout, communication, and grief.
This article spotlights Cristina Vargas, who shares why caregiver respite is vital for parents of children with rare diseases. She reflects on the emotional and physical toll of caregiving and how small moments of self-care help her better support her children and maintain family strength. Cristina’s story is a reminder that caring for oneself is an essential part of caring for others.
In this article, Jon Scheinman shares his journey as a caregiver to his daughter Livy, who has lived with epilepsy since birth. Through advocacy, fundraising, and education efforts like Lemonade for Livy, Jon and his family have worked to raise awareness, reduce stigma, and support the epilepsy community. His story highlights the importance of resilience, self-care, and giving back to make a lasting impact.
In this story, Mary Anne Meskis shares the emotional journey of caring for her son Elliot, who lives with Dravet syndrome. She reflects on the toll caregiving has taken on her own mental health and the lessons she’s learned about the importance of self-care and community. Her experience shows how connecting with others and prioritizing your own well-being can strengthen families facing rare epilepsies.
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