us who in your life has inspired you to Make Sense of SUDEP. How did you first come to learn of SUDEP? What are the hurdles
you've encountered and what did you do to overcome them? How can others learn from your experience? Why
is it important to you to that awareness of SUDEP improves and what suggestions do you have?
Your tales of courage
and determination, of your mullings and musings, of your unquenchable thirst for information and of the
decimation SUDEP can bring are all important to help others relate, understand, realize and feel empowered to take action.
If you'd like to share your story, you can email us.
SUDEP: "Getting Involved"
Photo: Tyler Stevenson
Mark Stevenson, who lost his 20-year old son, Tyler, to SUDEP in 2011 tells his story and how he has become involved in the SUDEP community.
SUDEP: "Keep Asking Questions"
Corine Heim, who lost her 19 year old son, Evan
Bayko, to SUDEP last year shares her story and her message for parents of children living with epilepsy.
Photo: Evan Bayko
SUDEP: "Know about it. Understand it. Be aware of it"
Photo: Adrian & Jennifer Webley
Jennifer Webley, who lost her husband Adrian to SUDEP, shares her story and her belief in the importance of raising awareness of SUDEP and the need for more research.
Wrestling with "What if"
Doug Cleverley knows first-hand of the pain and
heartbreak of SUDEP. His wife, Traci Cleverley Pink, died from SUDEP in November 2011. The only tangible evidence that she
knew anything about SUDEP was a link Doug found on her laptop to an article. Read Doug's personal reflections on Traci's death, and his thoughts about discussing SUDEP and the need for more awareness.
Photo: Doug & Traci Cleverley
Working to "Force the issue"
Steve Wulchin lost his son, Eric, on July 9, 2009.Photo: Eric Wulchin
Here he shares his story, which was submitted as testimony to the Institute of Medicine (IOM) towards their study
on the 'Public Health Dimensions of the Epilepsies'. [As an aside, watch for the committee's report
on recommended actions, due for publication and public briefing March 30, 2012].
Eric's dad says,"Our son
died of SUDEP two years ago, at age 19. Sadly, only after his death did we learn of SUDEP. That's
not acceptable. From here on patients, their families and advocacy groups have to work to force the issue.
My wife, Eric’s brother and I are deeply appreciative of the fact that others are now rallying behind making
SUDEP a public priority."
Steve's story was also covered in
the article 'Unmasking Silent Killer in Epilepsy', by the New York Times reporter Aliyah Baruchin on July 26, 2010.
Stories from around the globe
This downloadable publication contains the stories of several families whose lives have been heavily impacted by SUDEP. These are interspersed
with articles from leading SUDEP authors in the medical, legal and health professional fields from around the globe to provide
an overview of our understanding of SUDEP in 2011.
Photo: Book cover. Published
by Epilepsy Australia, Epilepsy Bereaved & SUDEP Aware