My son, Henry, was a beautiful, happy and healthy little boy. As a 3-year old he suffered from a few febrile seizures. His medical evaluation for these seizures revealed nothing and we soon learned that they are not uncommon in childhood. However, a few months after his 4th birthday, he had a seizure that was not associated with a fever. Before his epilepsy work-up was even complete and before he had a chance to become therapeutic on his medication, Henry died in his sleep from SUDEP.
A mere five weeks after our son’s first epileptic seizure, he had died. It happened so fast. In addition to the horrific pain of losing my oldest son, I felt so blindsided. How could this have happened? He had great medical care. The odds were that he would grow out of this childhood epilepsy. And to think, I had a background in nursing and public health and still had no idea that epilepsy could be so devastating.
After months of anger and sadness, I discovered CURE (Citizens United for Research in Epilepsy). CURE was founded by parents of children with epilepsy who were frustrated by their inability to protect their children from the devastation of seizures and the side effects of medications. It was among some of these parents that I found understanding and through CURE that I found hope.
Since joining the CURE board, I have become more involved in advancing understanding around SUDEP. I have shared our story publicly to raise awareness of the need for research as well as the need for providers to discuss SUDEP with their patients. Our family also support CURE’s SUDEP-focused grant program and has had the opportunity to fund innovative and exciting research.
I most enjoy working with other epilepsy organizations as well as clinicians, researchers and professionals from NIH (National Institutes of Health) and CDC (Center for Disease Control). While there is still such a long way to go, I am thankful for the growing US interest in SUDEP. This is most evidenced by more governmental funding being made available to advance research. Additionally, more epilepsy organizations are working together towards a common goal to fund research and advance provider and patient understanding and communication around SUDEP. It keeps me going to be part of these efforts.
Though I cannot bring Henry back, I hope for nothing more than to prevent others from having to suffer such a loss. I firmly believe that with persistence we can unravel the mysteries of SUDEP and put an end to the fear and anguish it causes.
Global Conversation 2011