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Remembering Lives Lost to Epilepsy

Miguel Cervantes and daughter Adelaide (Facebook)

November is Epilepsy Awareness Month, and we're honoring everyday warriors in the fight against epilepsy

November is Epilepsy Awareness Month, and it’s a time to remember that sometimes, epilepsy takes lives. Not everyone realizes that epilepsy is as potentially deadly as it is, but while most people with epilepsy won’t die from it, thousands do each year. Sudden Unexpected Death in Epilepsy (SUDEP) happens in about one out of every 1000 cases of epilepsy every year, taking the lives of people with epilepsy who are otherwise healthy. 

Death from epilepsy has been in the news this year. In July, Disney Channel star Cameron Boyce died from a seizure in his sleep. The 20-year-old had epilepsy, and doctors confirmed that SUDEP was responsible for his death.

More recently, “Hamilton” star Miguel Cervantes’ three-year-old daughter, Adelaide, died in October after suffering a severe form of epilepsy for most of her short life. Cervantes and his wife, Kelly, are supporters of Citizens United for Research in Epilepsy (CURE), which funds much-needed research into a disease that still isn’t fully understood. In 2017, Cervantes recorded the song “’Til the Calm Comes,” with proceeds benefitting CURE.

Miguel and Kelly Cervantes aren’t working alone in the fight to find a cure for epilepsy. All over the world, people whose lives have been touched by epilepsy are raising money and awareness. In observation of Epilepsy Awareness Month, we’re sharing some recent obituaries for some of the everyday warriors in this fight. Some were living with epilepsy and others were doctors working on the front lines — but they’re all united in requesting memorial donations to epilepsy research.

Cathleen Jo Kilburn: “She was diagnosed with epilepsy approximately 14 years ago. However, she had no intention of letting a seizure stand in her way and refused to change her lifestyle. She subsequently swam several Peaks to Portland, often medaling in her age group; she continued her triathlons and again often won medals, placing high in her age group.” Memorial donations are requested to The Epilepsy Foundation of New England, 650 Suffolk Street #405, Lowell, MA 01854.

Michael Kubek III: “He dedicated countless hours in an effort to help those with ALS, received a grant from CURE in hopes of eradicating Epilepsy, and, at the end of his career, obtained a grant from the Department of Defense. This last project would focus on those he revered as true heroes, our nation's Active Duty and Military Veterans. Mike continued to work, while undergoing chemotherapy, in hopes this collaborative research project would help combat the rising suicide rate in our nation's Military, and further demonstrate the safety of TRH in adults. To this end, he dreamed that following such success would ensure his ability to help children worldwide suffering from intractable seizures.” Memorial donations are requested to CURE Citizens United for Research in Epilepsy cureepilepsy.org.

Anne Cathryn Browning: “Though Anne Cathryn lived with epilepsy that was not fully controlled by medication, she did not let it stop her from living life to its fullest and enjoying every moment. On that Saturday night she was home alone and wasn't feeling well. She chose to break one of the cardinal rules of epilepsy, she took a bath. She had a grand mal seizure in the bath tub and drowned.” Memorial donations are requested to NYU FACES (Finding a Cure for Epilepsy and Seizures), 223 East 34th Street, New York, NY 10016. For online donations: https://nyulangone.org/give/fundraise/annebrowning.

Scott Andrew Figved: Scott died “after a courageously fought long and difficult battle with Epilepsy, other associated conditions, and SUDEP Sudden Unexpected Death in Epilepsy.” “Scott was a strong advocate for handicapped mobility and accessibility. Scott was proud to contribute to the RTA's Transit Access Citizens Advisory Board, providing information and suggestions on ways to improve handicapped access to the Chicagoland Transportation System.” Memorial donations are requested to “the Danny Did Foundation dedicated to the mission of preventing deaths caused in seizures that impacts the almost three million people in the United States suffering from Epilepsy.”

Sam Serrano: “Sam was diagnosed with epilepsy at the age of 7 which impacted his life, but he let this be a blessing which drove his compassion for others who were facing similar struggles in life. Sam rose above this each day and never wanted epilepsy to define him. Instead, he reached out to others in greater need with support, knowing how important that same presence was in his own life.“ Memorial donations are requested to "The Sam Serrano Memorial Fund" c/o Mariner Wealth Advisors, Attn: Trey Barnes, 5700 W. 112th Street, Suite 200, Overland Park 66211, benefitting epilepsy and other causes in the spirit of Sam's memory.

Kathleen Day: “From sky diving at Georgia Tech to bungee jumping to celebrate her 60th birthday, Kathie lived a full life, never giving in to the epilepsy that she battled her entire adult life. Always wanting to do things for herself, she went from learning to maintain her own vehicle to designing and building houses. She founded and managed her own highly successful home building company, Kathleen Day and Associates, for 34 years.” Memorial donations are requested to the Epilepsy Foundation (Epilepsy.org, 8301 Professional Place East, Suite 200, Landover, Maryland 20785.