It is always deeply distressing to learn of the death of a child. For me, it hits even closer to home if that death has been caused by a seizure.

In the days following the news that John Travolta’s and Kelly Preston’s son, Jett, had died suddenly, I was drawn to the confused reporting, seeking some clarity about whether he had, in fact, died while having a seizure.  The stories were varied: he had a history of seizure disorder, he had Kawasaki disease (which, beyond causing febrile seizures, is not implicated in intractable epilepsy), he was on anti-seizure drugs, he wasn’t on medication, he was autistic, he wasn’t. Much has been rumored on blogs and in website comment fields about the role of Scientology in determining his care, though it seems there is little solid information about that aspect of the case. (The autopsy report confirmed seizure as the cause of death today.)

What became clear to me in the midst of this is that the news agencies and media outlets seemed unaware of, or uninterested in discussing, the devastating nature of an intractable seizure disorder, or one that cannot be controlled with medication or other interventions (which Jett’s appears to have been).

Those who live with uncontrolled epilepsy every day well understand that seizures are potentially devastating to people’s ability to learn and live independently. My five year old daughter has Aicardi Syndrome, one of most significant features of which is early onset, intractable seizures. She and other Aicardi individuals are generally very severely effected as a consequence of this disorder—many are severely developmentally and physically disabled, most will never life independently, and very tragically, they are at risk for life-threatening complications. Aicardi is far from the only such syndrome, and indeed, many seizures disorders have no known cause.

For the sake of families who are coping with the various forms of epilepsy,  I want to share some basic facts about seizures and the sometimes catastrophic consequences they have on people in your communities, as well as links to organizations that offer hope through information, research funding, and support.

• In the United States, over 3 million people of all ages are affected by epilepsy—this is more than have multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

• Over thirty percent of these individuals are unable to obtain seizure control with medication or other treatments, meaning that they continue to suffer not only the terrible effects of seizures, but often the often debilitating consequences of seizure medications that are only partially effective.

• The mortality rate among people with epilepsy is two to three times higher than the general population; the risk of sudden death is twenty-four times greater. Approximately 50,000 deaths occur every year in the United States from seizures or seizure-related accidents.  

To learn more, or to take action to support research and finding a cure, please contact the following:
Citizens United for Research in Epilepsy: http://www.cureepilepsy.org
Epilepsy.com: www.epilepsy.com
American Epilepsy Outreach Foundation: www.epilepsyoutreach.org
Epilepsy Foundation: www.epilepsyfoundation.org