Savannah Salazar was a feisty, energetic toddler until she was about two-and-a-half years old. Then, for reasons her parents and doctors still don’t understand, she began having seizures.
At first it was just a few episodes a day. Then there were dozens each day – jerking seizures, staring seizures, fall-to-the ground seizures – at all hours of the day and night.
“I have been watching Savannah seize for 15 years, and nobody should have to watch that,” says her mother, Tracy Dixon-Salazar. “Nobody should have to watch their kid have one seizure, let alone 27,000 seizures, and I count them because that’s all I can really do.”
That full-of-life toddler is now a 25-year-old woman who needs multiple medications and constant care from her family to protect her health and safety. Their story is told in a new documentary produced by Tiffany Webb, a Washington County native and Lexington filmmaker. Webb appeared on KET’s Connections to discuss her documentary and her own battle with epilepsy.
Living with an ‘Invisible Condition’
Webb was seven years old when she began having mild seizures that she describes as staring spells where she briefly loses consciousness. It would be another five years before doctors finally confirmed a diagnosis of epilepsy.
Even with medication, Webb says she still doesn’t have control over her seizures, which can happen multiple times a day, or disappear completely for months at a time. She calls her epilepsy an “invisible condition.”
“People don’t see how you have to restructure your entire life,” Webb says. “I don’t drive to this day… I have to schedule things in advance. I have to prioritize my health and wellbeing.”
Her own journey with the disorder inspired her to make a film that could help raise awareness about epilepsy as well as the challenges faced by families living with the condition and researchers trying to find a cure for it.
The documentary is called “Voice of the Epilepsies.” That’s because epilepsy isn’t just a single condition; it comes in thousands of forms that range from mild to severe. But they all are marked by sudden, recurring, and unpredictable episodes caused by an electrical abnormality in the brain that affect a person’s alertness, motor functions, or bodily sensations.
Webb and her then-husband spent five years following the day-to-day struggles of Savannah Salazar as she navigated family life, school, and doctors appointments. In home video clips, viewers see Savannah change from a boisterous child to a teenaged girl who must wear a helmet to protect her head from uncontrollable bouts of jerking, twitching, and seizing. Along the way, her parents, Tracy and Ruben, and her older brother keep a watchful, loving eye on her.
“I mostly just feel like we’re trying to keep Savannah alive and uninjured,” Tracy says in the film.
The Search for Multiple Cures
Some 65 million people worldwide have some form of epilepsy. In fact, the odds are about one in 10 that a person will have at least one seizure during their lifetime, according to Dr. Jerome Engel of the Seizure Disorder Center at UCLA Health Systems, who appears in “Voice of the Epilepsies.” But he says only a third of those who do have a seizure actually go on to develop some form of epilepsy.
Treatments range from medications and surgery, to dietary changes and electrical nerve stimulation. Engel says drugs can control seizures in about 60 percent of patients, while the remainder may be faced with a lifetime disability.
“There’s so many different types of epilepsy that there are going to be cures when we find them – it’s not going to be one answer, which just makes it more challenging to do,” says Susan Axelrod, founding chair of Citizens United for Research in Epilepsy, in a clip from Webb’s film. “We prefer to look at it as great opportunities and we think that understanding epilepsy is going to be a window into understanding all sorts of other brain disorders.”
After three years of seizing, Savannah Salazar was diagnosed with a severe form of childhood epilepsy known as Lennox-Gastaut syndrome. It results in a range of seizure types as well as intellectual disability. She is not a candidate for surgery because her seizures originate from too many locations in her brain. But the family has had some successes with medications and dietary treatments.
“I have a love/hate relationship with medications because I know they are a lot of the reason that she has so many problems walking and talking,” Tracy says. “But she would not be alive today without medication.”
Even with these treatments, Savannah’s prognosis is not good. Tracy says her daughter has been near death four times with episodes of continuous seizures. Ruben Salazar recalls finding his daughter unresponsive at home. He performed CPR, and with each pump of her chest, he thought to himself that he was not ready to let her go. Both parents live with the fact that their daughter is not expected to survive to her 30th birthday.
“That scares me – I know it’s coming,” Ruben says. “You’ve got other [parents] talking about cheerleading camp and softball, we’re talking about trying to plan our daughter’s death.”
Finding the Silver Linings
Instead of living in a constant state of fear and frustration, Tracy took matters in her own hands. The stay-at-home mom went back to school to improve her English skills so she could better understand the medical information she amassed about Savannah’s condition.
Then she decided to take some science classes, which she discovered she loved. That led her to obtain an associate’s degree, then a bachelor’s degree, and finally move on to graduate studies.
“Somewhere, I think maybe in the first or second year of grad school, I decided that I loved science enough and I disliked epilepsy enough to marry the two,” says Tracy. “I wanted to do epilepsy research.”
Now Tracy has her Ph.D. and she serves as director of research and strategy for the Lennox-Gastaut Syndrome Foundation, a non-profit organization that raises funds to support people living with the condition and to fund research.
“It’s not just about creating a medication that’s going to have less side effects or creating a medication that’s going to cut her seizures down by 30 percent,” she says. “It’s about finding a cure for this horrible, horrible disorder.”
Despite the daily challenges, the Salazars say they still find great joy in their lives with Savannah.
“She’s just so full of love and she’s just somebody you want to be around,” says her brother, Talon.
That positive attitude is crucial, says filmmaker Tiffany Webb.
“You can find silver linings in everything. You can find strength in trials… You always can take a bad thing and help someone else,” Webb says. “There’s freedom in accepting yourself or accepting what you have or what you’re going through.”
While Webb is expected to have a full life, she is haunted by the fact that 50,000 people die each year from seizures. She says that drives her to continue to use her storytelling talents to raise awareness about epilepsy.
“I just don’t want those people to die year after year,” Webb says. “So it’s tough sometimes, and I just keep it in mind that I’m plugging away and I’m doing what I can, and that’s all that matters.”
“Voice of the Epilepsies” airs on KET-KY. throughout July and August. The documentary is also available to rent or purchase on Vimeo. Webb says she is donating a portion of the proceeds of video streaming and sales to epilepsy research.
