SUDEPAware

SUDEP: getting involved

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Two years ago my 20-year old son, Tyler, passed away from SUDEP and I found myself in the unimaginable situation having to communicate with the coroner’s office, take care of the funeral arrangements, the life insurance, remove his name from junk mailing lists, place notices with credit bureau agencies, etc.  After this was all done I wondered what was next.  I’ve known families who have lost their child way too soon.  We never thought this would happen to us.

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My family went to grief counseling for a short time, trying to deal with the loss.  I’ve known families who withdrew from the public, allowing the grief to take control of their lives.  I’ve known other families who got involved in not-for-profits hoping to make a difference; working to channel their energy and loss into action.  I did a lot of research investigating what happened to my son and what organizations were doing to advocate for epilepsy and SUDEP, as well as the current medical research ongoing in the areas of epilepsy and SUDEP.  I found many.  CURE, Epilepsy Foundation, SUDEP Aware, Epilepsy Australia, Epilepsy Bereaved UK, University of Iowa, etc.  I wondered what I could do to make a difference.

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How we learned about SUDEP

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We were upset that we were NEVER told about SUDEP by the many providers who saw Tyler over the 7 years he lived with his epilepsy.  I wanted to find a way to encourage the medical community to accept that SUDEP is real and I wanted them to inform families about the risk, even if the risk was low.  The providers I spoke to did not believe that talking to patients/families about SUDEP was in the best interest of the patient/family.

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I found out about SUDEP on the Internet, after the police came to our house at 11:00 pm to advise us that campus police had discovered Tyler dead in his dorm room.  For many families it’s after they find their son/daughter dead at home.  What a terrible way to learn about SUDEP!  I had to get involved.

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I found SUDEP Aware on the internet.  I found a lot of good information about SUDEP, stories of other families who lost their loved ones to SUDEP, and I found Tamzin Jeffs.  I discovered that Tamzin lost her sister to SUDEP and she herself lives with epilepsy, thus had a personal connection and people with personal connections usually make the most good out of difficult situations.  I sent Tamzin Tyler’s picture to put on the “In Memoriam” section of the SUDEP Aware website.   I did not want Tyler to be forgotten.

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Julie Hutchison, from our home state Colorado, reached out to me shortly after Tyler passed away.  Julie and Doug lost their daughter to SUDEP 2½ years prior and formed the Chelsea Hutchison Foundation, a non-profit organization that raises money to help pay for seizure response dogs, Emfit monitors and SmartWatches, all seizure detection devices.

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From tragedy to action

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My wife wanted to also do something in Tyler’s memory and folks were giving us money after Tyler passed away.  We decided on funding a scholarship for an undergraduate student with epilepsy attending the University of Colorado, Boulder.  We knew that these students already had enough challenges to get through middle/high school and we wanted to make their lives a little bit easier.  Within 7 months, two students were awarded the Tyler J. Stevenson Memorial Scholarship and this year we awarded two more.

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Tamzin reached out and asked if I wanted to include Tyler’s story in the “Sudden Unexpected Death in Epilepsy: Continuing the Global Conversation” book and I immediately agreed.   It was published in August 2011 and I have since hand carried copies to many local neurologists, epileptologists and family practitioners to help spread awareness.

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I also reached out to Steve Wulchin in Boulder, Colorado, who lost his son Eric to SUDEP.   I’d read his story in the New York Times.  Steve was preparing to give testimony for the Institute of Medicine’s (IoM) examination of the public health dimensions of the epilepsies in 2011.  I contacted them and submitted a six-page testimony on Tyler’s epilepsy, the lack of SUDEP education and awareness and the lack of providers talking about SUDEP.  The IoM issued a report in March 2012, which included a quote from my testimony, and my full testimony was later published in Epilepsy and Behavior in January 2013. Again, anything that I could do to get Tyler’s story out there and to make a difference encouraging providers to recognize and talk to patients/families about SUDEP, I was in!

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I found the Citizens United for Research in Epilepsy (CURE) website and immediately signed up to receive monthly updates.  With some members of the board themselves bereaved by epilepsy, they are strongly dedicated towards advancing the study of SUDEP via their SUDEP research funding program.

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I also attended the 2012 Partners Against Mortality in Epilepsy (PAME) conference, the first of its kind to bring together doctors, researchers, advocacy groups and families from around the world  to focus on sudden death in epilepsy.  After the PAME conference ended I cried as I walked back to my hotel room.  It was heartening to hear all these entities promising to work together for SUDEP research, advocacy and treatment.   I was also beginning to get a better understanding of how Tyler might have died as researchers narrow in their focus on the respiratory and cardiac systems, and how they communicate with the brain.

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During PAME I met a fabulous physician and researcher, Dr. Alicia Goldman from Baylor College of Medicine (BCM).  Dr. Goldman was conducting some cutting edge genetic research and its possible connection with SUDEP.  I told Dr. Goldman that there was a history of epilepsy in my wife’s family and asked her if we could participate in her study.  When I returned home I sent Dr. Goldman my wife’s family tree, sent her copies of Tyler’s medical records and signed a release to have the coroner’s office send stored tissue from Tyler’s autopsy to BCM.  Twelve members of my wife’s family (including myself and my son) agreed to give blood and saliva samples to BCM to help in her research.

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The momentum builds

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I reached out to the Epilepsy Foundation of Colorado (EFCO) about the lack of information about SUDEP on their website.  I continued to be persistent and a few weeks later SUDEP information was posted.  I learned of their annual Strides for Epilepsy event and signed up “Team Tyler” for the past two years.  I also learned about EFCO’s great programs for youths and adults.  Unfortuntately, during all the years that we lived in Colorado and Tyler had epilepsy, we were never told about EFCO as a potential resource.  They have a great youth camp in Estes Park attended by over 100 kids with epilepsy; an opportunity for kids to have fun with other kids dealing with the same challenges on a daily basis.  Tyler would have loved this camp.  I maintained close relationship with EFCO staff and last summer readily accepted their offer to become a member of their Board.

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In December 2012 I attended the American Epilepsy Society (AES) annual conference in San Diego on behalf of EFCO.  I was so pleased with the amount of attention given to SUDEP, including focus group meetings, poster sessions, advocacy group exhibitors and special mention during speeches by the President of AES, the Assistant Secretary of Health and Human Services and the Director of the National Institute of Neurological Disorders and Stroke.  I also learned of the existence of an AES SUDEP task force and volunteered to serve on this group.

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As you can see, I had many choices after Tyler died.  I could have withdrawn and continued to grieve internally, gone about my daily life and remained an outsider to anything taking place in the medical/research community, or I could have gotten involved and tried to make a difference in Tyler’s memory.  I chose the latter and I think that in the short time since Tyler’s death I have made a little difference.

 

Making a difference

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I often wonder what Tyler would think about all of this.  Tyler was introverted and shy and had some very interesting beliefs about life, religion, and death.  I loved having deep conversations with him during our weekly hour-long drives between home and college.  Tyler would have said “Oh dad, stop!  Don’t make a big deal about me."  Tyler was my first son and I was so proud when he was born.  I named him and I still recall, like it was yesterday, when I first held him in my arms; staring at this young life that I helped to create.  I was a Disney dad.  Since age four I was his soccer coach, baseball coach, basketball coach, his Cub Scout den leader, his doting father and he was my “bud.”  I talk to him now every day and say hello.  I miss him!

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There is still a LOT of work to do; more research, more convincing providers to talk about SUDEP with their patients/families, and more advocacy about epilepsy and SUDEP.  I am only one parent and it will take a lot of parents convincing healthcare providers to discuss SUDEP, and it will also take a lot of parents willing to participate in SUDEP research to make a difference.

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Please continue to tell your story, advocate for epilepsy and SUDEP with your elected officials, support groups, providers and anyone who will listen.  Epilepsy impacts more lives, including deaths due to seizures, than most any other disease or condition worldwide, yet public awareness and understanding about epilepsy is almost non-existent.  I believe epilepsy awareness and public recognition of epilepsy should be right up there with the Susan G. Komen movement for breast cancer, Stand Up to Cancer Movement, World AIDS day, etc. but it will take many more people to come forward to share their story.

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Together we can make a difference and help Make Sense of SUDEP!  Please get involved!

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Mark Stevenson
March 2013