Epilepsy in America: What Must Be Done

It was supposed to be an ordinary Saturday. on Feb. 16, 2008—a cool but not cold late winter's day—my wife and I had plans for a late breakfast with a colleague of mine in New York when the call came. The bright, beautiful 4-year-old son of our closest friends had died in his sleep, the victim of an epileptic seizure. Henry Foster Lapham—he is the wonderful child pictured here—had been diagnosed with epilepsy shortly before the attack that killed him; in the vernacular of the world of epilepsy, Henry suffered what is called Sudden Unexplained Death in Epilepsy.

There are no words to capture the horror of what happened to Henry. At a service in his memory in the Little Chapel on the grounds of St. Albans School in the shadow of Washington National Cathedral—the pain in the small sanctuary was palpable; I can feel it even now, more than a year later—his parents, Gardiner and Nicholas Lapham, somehow mustered the courage to speak. Here is part of what Nicholas said: "Gardiner and I are trying hard to find hope in the face of this inexplicable and overwhelming loss. Somehow we have to believe that the indomitable spirit with which Henry led life will steadily erode the shattering despair of his death until one day, many months or years from now, it triumphs. For this to happen, we face a long battle involving a great deal more than simply marking the passage of time. Our enemy is not grief but fear—fear of pain and the unthinkable reality of losing a small child. Surrendering to that fear by pushing the grief away and deceiving ourselves with the illusion of a return to normalcy is the surest way to extinguish hope. Rather we must fight this battle with Henry firmly by our side. We must celebrate him, tell stories about him, look at his picture, smile about him, talk to him and hold him tight to our hearts, even when doing so hurts to the point of being unbearable. Where this delivers us in the end we cannot now know. With luck we will be stronger and better as individuals, as a family and as a community, but we will never be the same."

Their rising to speak was one of the bravest things I have ever seen; their words among the most moving I have ever heard. Part of the battle Nicholas spoke of—only part, but a critical one—is the battle to understand the causes of epilepsy and to advance the cause of research into this widely misunderstood and too-little-known disorder, one that is as common as breast cancer in America.

The Laphams are not seeking attention; they are understandably committed to making sure that Henry's life is not defined by how he died. The only reason you are reading about them now is that I asked them to allow me to tell Henry's story in the hope that, by exploring the subject on our cover, NEWSWEEK might be able to help explain epilepsy and contribute to the debate over funding and research.

Two things prompted me to ask at this time. The first was the one-year anniversary of Henry's death. The other was a recent cover of Parade magazine that featured Susan Axelrod and her daughter, Lauren, who has lived with the disease since she was 7 months old. Susan, who is married to David Axelrod, President Obama's senior adviser, is a founding board member and president of CURE, Citizens United for Research in Epilepsy; Gardiner Lapham also serves on that board, as does Randy Siegel, the publisher of Parade, whose young daughter has suffered daily seizures for 11 years. The Sunday magazine's cover was a convincing call for awareness and action, and we wanted to add our voice to the conversation.

And so this issue of NEWSWEEK came to be because of Henry, and because of the millions of others who suffer from the neurological disorder that manifests itself in seizures. It is an especially mysterious affliction, for it is rooted in the mysterious complexities of the brain. Epilepsy is from the Latin epilepsia, which means "to take hold of," and those who suffer from the brain disorder find themselves in the grip of forces—forces from within their own bodies, their own beings—that they cannot control. It is terrifying. And it can be deadly.

In the cover package, we place epilepsy in historical context and demonstrate how it lags behind other neurological disorders in terms of research dollars; it is our contention that more funding is needed, and Sen. Edward M. Kennedy is considering legislation that would begin to move us in the right direction. Jerry Adler and Eliza Gray profile a doctor on the front lines of the epilepsy wars, Orrin Devinsky of NYU, and Susan Axelrod contributes an essay on her family's experience—and what it has led her to believe must be done.

"The worst thing that can happen to a family happened to us," says Gardiner. "If our story can help science learn more about the workings of the brain, then we should tell it." And the rest of us should listen, and act.