Shining a Valentine’s Light on Eli’s Illness

Six years ago, Eli Beller was your typical 7-year-old, soccer-playing, fun-loving kid until the headaches began.

His parents suspected he had a temporary sinus problem, but it never got better. Eventually it progressed to what resembled severe flu-like symptoms, and one day the little boy staggered like a drunk.

His famous grandmother, Eva Marie Saint, says the news from the doctor was not good.

“That night,” says the actress, “they operated on a brain tumor.”

In the next two weeks, Eli endured four operations.

“It was very dramatic,” says his mother, Laurette Hayden, “and touch-and-go.”

Fortunately, the tumor was benign and Eli pulled through. But the following year, he developed another problem that is with him to this day.

“He’d have strange abdominal pains, turn pale and not be entirely conscious,” says Hayden. “No one could quite figure it out. Amazingly enough, the school nurse called and said she thought it might be seizures.”

Hayden had her doubts, but the nurse turned out to be a good doctor. Eli had epilepsy, which might have been caused by the brain tumor or surgery. His family -- including grandparents Saint and Jeffrey Hayden, a TV director and producer -- was about to discover how little they knew about the disease.

Laurette Hayden and her husband, Miles Beller, knew about the familiar grand mal convulsion. To them, that was epilepsy.

But they soon learned epileptics can have more than 20 types of seizures, that 180,000 new cases are reported in the United States each year, that a four-county area in Southern California has at least 150,000 epileptics, and that nearly 50 million people in the world are afflicted.

As Saint said in a letter she sent to friends, “More people have epilepsy than Parkinson’s, cerebral palsy, muscular dystrophy, and multiple sclerosis combined.”

You don’t hear about fundraisers for epilepsy research and education, though, because there aren’t many.

“It’s not a ‘sexy’ disease,” says Laurette Hayden, a senior VP with the USA Network.

That’s partly because of an aggressive campaign, years ago, to de-stigmatize epilepsy. So says Susan Pietsch Escueta, director of the Epilepsy Foundation of Los Angeles, Orange, Ventura and San Bernardino counties.

The public got the idea that it was easily treatable, Escueta says. But medication doesn’t always stop the seizures, and victims live with all sorts of medical and social problems big and small.

Eli had the advantage of a family that did everything they could to educate themselves and help him. Eva Marie Saint and Jeff Hayden attended support group meetings run by daughter Laurette, who last year asked them if they could think of a way to raise a few dollars for the thousands of Southern California families dealing with epilepsy.

Yes, as a matter of fact. Saint, who won an Academy Award for “On the Waterfront,” and Jeff Hayden, who directed the likes of “Leave It to Beaver,” “That Girl” and “The Andy Griffith Show,” have been staging the two-character A.R. Gurney play “Love Letters” a few times a year.

It’s the story of a long love affair, and Saint and Hayden -- married for more than 50 years -- decided to stage the play this Valentine’s Day weekend. The show will be at the Beverly Hills Hotel at 2 p.m. Sunday.

“As you may know,” Saint wrote last November in an invitation to friends, “epilepsy has affected the life of our 13-year-old grandson, Eli.... Like many who live with epilepsy, his seizures are still not completely under control but he’s determined not to let them control his life.

“He approaches each day with a positive outlook and courage, is an ‘A’ student who loves music, the arts, and sports. He’s an inspiration to our family.”

At the bottom of her letter was a P.S.

“By the way, St. Valentine is the patron saint of epilepsy.”

A limited number of tickets can still be had by calling the Epilepsy Foundation at (310) 670-2870. The proceeds will help fund a camp for teens with epilepsy and another camp for kids and their families.

Eli, as it turns out, is among the roughly 25% of epileptics for whom medication does not prevent seizures. He has had the same relatively mild seizures every two weeks for several years, and at 13, worries about things like whether he’ll get a doctor’s clearance to drive when he turns 16.

But things are looking up for him lately. He switched to a new medicine, and has now gone nearly a month without a seizure.

Eli, who lives in Brentwood, was sitting down to a cheese pizza the other night when I called and asked about the speech he intends to make Sunday after his grandparents perform.

“I’m going to say, ‘I hope you enjoyed the show,’ ” Eli said.

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Steve Lopez writes Sunday, Wednesday and Friday. Reach him at steve.lopez@latimes.com and read previous columns at www.latimes.com/lopez.

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Reach for the sunblock today in Santa Paula, where temperatures will hit the low 70s under sunny skies.