The Legacy of a Happy Boy

Seizures in children have many causes and many faces. Some children become dizzy or apathetic and unresponsive, while others suddenly drop to the ground. Some shake so violently their little bodies fly across the room.

Joseph Romero was dealt the full deck: The wide range of seizures—sometimes up to 50 a day—indicative of Lennox-Gastaut Syndrome, a rare and particularly vicious neurological disorder.

Joseph was born in 1991 and experienced his first grand mal seizure at six months. This was a time when his parents, Rita and Frank, didn't have the benefit of the internet to help them understand it all and also a time when there were relatively few pediatric neurologists in San Diego.

"I went to the library, talked to doctors, read anything I could," says Rita, "but Joseph's type of epilepsy was so rare there wasn't a lot of information."

Still, Rita and Frank would come across treatment options and present them to Joseph's doctors, only to be discouraged by their conservative reluctance.

"This isn't working," Rita told Frank—until they found Dr. Doris Trauner, then the Interim Chair of UC San Diego's Department of Neurosciences and Chief of Pediatric Neurology.

"The first day we met Dr. Trauner, she suggested the Ketogenic diet. I had read about the diet, but his previous doctor felt Joseph was too thin to be on this plan. When the diet didn't work, Dr. Trauner suggested a medication with very severe side effects. She encouraged us to try it and she would monitor Joseph for the side effects very closely. She was very cutting-edge, learning something new every day," Rita says.

With Dr. Trauner's help, the Romeros were empowered with opportunities to give Joseph every possible chance. "Dr. Trauner suggested a Vagal Nerve Stimulator, and with the combination of the new medication and the VNS, we felt Joseph's life was extended by at least five years," Rita says.

Initially told that their baby had a life expectancy of two to three years, Joseph's parents were delighted with his sunny presence until the day he died of an overwhelming seizure at age 13.

"He was a happy, happy child," says Rita, "and we were like the Three Musketeers, always together."

"We got really good care at UC San Diego," Rita adds, though she admits it became tedious at times for Frank as each fresh wave of med school students and fellows came through with their questions. "We'd have to start from the beginning and eventually the doctors got wise to my husband and would send him out for coffee while they questioned me!"

Joseph was never enrolled in a study at UC San Diego, yet he was a teacher who inspired future pediatric neurologists.

After losing their son in 2004, Rita and Frank moved to New Mexico, Frank's home state, to find peace in a small mountain town. When Frank suddenly lost his life in a work accident in 2011, Rita again found herself tapping into the serenity of her surroundings to heal.

"I came to the realization that I have no close family to leave this beautiful property to, and ah hah, it came to me. Frank always used to say: 'When we win the lottery we're giving a huge donation to UC San Diego to research Lennox-Gastaut.'"

So Rita has done that by naming UC San Diego in her estate.

"It's what Frank and I wanted, and Joseph wouldn't want other kids to suffer as he did. This gift may entice someone to do the research on Lennox Gastaut Syndrome. Dr. Trauner's research, knowledge and care for pediatric epilepsy showed us that a difference can be made," she says.

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