Patti's Comments: Reading the article linked below really touched me. I have served on the board and as a volunteer for our United Cerebral Palsy Association for over a decade. I had never heard of Ohtahara syndrome before this article. But now I know, and there are some resources for folks (see links below article excerpt):

Son's Death Recasts Image of a British Leader (New York Times - 2/25/09)

Ivan Cameron was just 6, a boy with a lovely smile who was born with cerebral palsy and a severe form of epilepsy that deprived him of the ability to walk, talk or feed himself. He spent much of his time in the hospital, sometimes with his parents sleeping on the floor beside him, helping care for their “beautiful boy.” ...Ivan’s early death was not unexpected, given the severity of his form of epilepsy, known as Ohtahara syndrome, which requires round-the-clock care.

Resources regarding Ohtahara Syndrome:

Ohtahara Syndrome Information Page
From the National Institute of Neurological Disorders and Stroke.

Ohtahara Syndrome Support Group
This website is dedicated to the families, carers and friends of Children with Ohtahara Syndrome. Its main aim is to provide information and support to those caring for OS children as well as to those who may have lost children to this severe neurological disorder.

A Sister's Pain: The Devastating Effects of Switching Medication (Epilepsy Foundation)
The cover story of this edition chronicles the devasting effects of switching medication, including increased seizures, side effects, and even death.

Newsweek Magazine Shows Real Effects of Epilepsy (Epilepsy Moms.com)
Finally, a thorough article outlining the complexities and dangers of having epilepsy. The April 20th edition of Newsweek magazine did a front page story on "The Mystery of Epilepsy - Why we must find a cure". Great to see this kind of recognition from a major publisher.

Unmasking Silent Killer in Epilepsy (New York Times - 7/26/10)
On July 9, 2009, Steve Wulchin went to wake his 19-year-old son, Eric, in their home in Boulder, Colo. Eric had been given a diagnosis of epilepsy three years earlier, but other than that, his father said, “there was nothing out of the ordinary.” His seizures had been well controlled; he had not had one in six months. Yet that morning, Mr. Wulchin found Eric lying on the floor. CPR and paramedics were too late; Eric had died at about 2:30 a.m. The cause of Eric’s death was ultimately listed as Sudep, for sudden unexplained death in epilepsy. The syndrome accounts for up to 18 percent of all deaths in people with epilepsy, by most estimates; those with poorly controlled seizures have an almost 1 in 10 chance of dying over the course of a decade.

Epilepsy Foundation
A national voluntary agency solely dedicated to the welfare of the more than 3 million people with epilepsy in the U.S. and their families.

Epilepsy Legal Defense Fund
Mission: To end epilepsy-related discrimination and injustice through education and increased access to legal services for individiuals with epilepsy.

Epilepsy: Overlooked and Underfunded too Long
Epilepsy in America is as common as breast cancer and kills as many people. Yet funding for epilepsy research lags far behind other neurological conditions.