End SUDEP Now

Jessica Bonney Reveley, 36, courageously lived with tonic-clonic and juvenile absence epilepsy since she was in her early teens. Through it all, she never let epilepsy define the life she would lead. She was a wife, mother, daughter, sister, lawyer, Virginia Supreme Court law clerk, community and church volunteer, and she was fun! 

Yes, there were risks, but she confidently moved forward to fulfill her life’s dreams and goals. Being socially active with many wonderful relationships, staying cognitively sharp in school and in her profession, having not one, but two children – all occurred with medication monitoring and professional oversight. Tragically, however, through all her years of living with epilepsy, no one told her or her family about sudden unexpected death in epilepsy (SUDEP). 

Jessica was the oldest of three children and was raised in a close and extended family. She was a role model and “cheerleader” for her siblings and freely shared her love and enthusiasm for life with others. She continues to be a role model for those with epilepsy who feel that it prevents them from excelling and living a rich and joyful life. 

In high school, Jess was a National Merit Finalist and her school’s Scholar Athlete of the Year. She then attended Princeton University, graduating in 2005 with departmental honors. After graduating William & Mary Law School, she served as a law clerk for a Superior Court judge in New Jersey and, thereafter, became a permanent law clerk to a Virginia Supreme Court Justice. 

In 2009, Jess married a fellow Princeton grad and together they were raising two beautiful boys, who were 6 and 2 at the time of her passing. Among other things, Jess loved crafting pumpkin pies, appreciating Rieslings, relishing musical theater, conquering jigsaw puzzles, wrestling and snuggling with her boys, orchestrating holiday traditions, and unpacking the finer points of The West Wing. She was a huge fan of the magical world of Harry Potter as well, and her boys have now fallen madly in love with Harry too, in part because it affords such a direct line of connection to her. Her oldest today often asks Harry Potter questions as he’s waving around “my Mom’s magic wand” and then he’ll affirm assuredly, “I bet Mom would know.” 

Her sudden inexplicable death in November 2019 at age 36 has left an enormous hole in so many lives – especially the lives of her boys and her husband. Her death also brought bittersweet joy to many - as she firmly believed in organ donation and delivered the gift of better life to the many recipients of her organs. Her brain was provided to further SUDEP research. 

At present, we will never know if additional precautions with medications, sleep, and stress management would have made any difference. Perhaps we may learn whether there is a recognizable neurological or physiological explanation why Jess did not awaken from her final seizure. There are two things, however, we do know – one, it is essential that treating doctors inform their patients of the risk of SUDEP so that they fully understand the importance of seizure response and medication management. 

The Epilepsy Foundation’s SUDEP Institute and other organizations are currently engaged in this endeavor and need our support. Two, more research is needed to discover the cause of SUDEP, and to focus on why those with tonic-clonic and certain other forms of epilepsy are at greater risk of SUDEP. The SUDEP Institute, Partners Against Mortality in Epilepsy (PAME) and the North American SUDEP Registry along with other neurological research teams are working to find a cause and prevent it. They need our continued support. So let us each do what we can to END SUDEP NOW – to stop such tragic loss. 

With loving admiration of this extraordinary woman – 

The Reveley and Bonney Families