Dravet Syndrome

Dravet has given us a serious dose of perspective. It has showed us that the “worst case scenario” does happen sometimes, but you just have to deal with it - Morgan Turpin

Dravet Syndrome
Dravet Syndrome

image by: Dravet Syndrome UK

HWN Suggests

Sweetness…bittersweetness…

Those series of moments that stand out from all the others because of the palatable difference in their energy, thick in the air. Joyous. Laughter. Clarity. Sweetness. So sweet my heart jumps. Tears in eyes. Awe. Siblings playfully teasing each other, laughter bubbling up. My son, understanding jokes and making his own.

No frustration because one can have a snack that the boy can’t have. Instead, Blake inquisitive about her ice cream, happy with his pathetic ‘cereal snack’ of 5 Rice Krispies. Magical moments when these siblings have a camaraderie common amongst others and rare between ours.

Wait, what’s that? Fear? Fear bubbling up in my gut. Why fear? Why now? Because moments…

read full article

Resources

 Sweetness…bittersweetness…

That’s what 5.5 years of relentless seizures, emergencies, sleep deprivation can do. I want to breathe in the magic of last night. Linger in his embraces. His laughter. So I will love it, even if it is bittersweet, because of its rareity.

Dravet Syndrome Foundation: Molly’s Story

The Dravet Syndrome Foundation is a volunteer-based, non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions.

Dravet Syndrome Foundation

The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families.

Dravet Syndrome UK

Dravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through support, education and medical research.

Dravet-Syndrome.com

Dravet syndrome is a rare and deeply impacting condition for both the child and his family. That is why, throughout the world, families have gathered around association to provide advice and support.

dravetmomma

A journey supporting our son with a severe form of epilepsy…

Haley is my Hero

Haley has had uncontrolled seizures since she was 5 months old. It was not until she was 7 years old when she was diagnosed with Dravet syndrome, a catastrophic form of epilepsy. Haley's journey with Dravet has taken us on many unexpected twists and turns. I am blessed to be her mom and see the goodness of others through her.

Jackson Stormes: A Difficult and Amazing Journey

Living with Dravet Syndrome and all the complications.

Little Luella

All about our little Luella and her battle with seizures and Dravet Syndrome.

TakeOnEpilepsy.com

Caregivers who face treatment-resistant epilepsies such as Dravet syndrome, Lennox-Gastaut syndrome, and Tuberous Sclerosis Complex share a journey unlike any other. There are challenges every day that require you to become experts in these serious conditions. This site was developed by GREENWICH BIOSCIENCES with you in mind–and in charge!

Team Kye

Team Kye supports Kyelynn's journey with Dravet Syndrome a rare genetic childhood epilepsy.

Epilepsy Foundation

Dravet syndrome is a rare genetic epileptic encephalopathy (dysfunction of the brain). It begins in the first year of life in an otherwise healthy infant. Prior to 1989, this syndrome was known as epilepsy with polymorphic seizures, polymorphic epilepsy in infancy (PMEI), or severe myoclonic epilepsy in infancy (SMEI). The disease begins in infancy but is lifelong.

Introducing Stitches!

Your Path to Meaningful Connections in the World of Health and Medicine
Connect, Collaborate, and Engage!

Coming Soon - Stitches, the innovative chat app from the creators of HWN. Join meaningful conversations on health and medical topics. Share text, images, and videos seamlessly. Connect directly within HWN's topic pages and articles.


Be the first to know when Stitches starts accepting users


Stay Connected