It was 1:30 a.m. on Dec. 28, 1995. Tracy Dixon-Salazar and her husband, Ruben, woke up to the sound of their 2-year-old daughter gagging in her room.
“We went running in there and saw her tiny little body jerking violently in her bed. She turned blue, stiff as a board and her eyes were rolled up. She was drooling and quivering,” Tracy recalled.
“Savannah was taken to the hospital, but the tests were normal. The doctors didn’t know what caused it and simply told us to them if it happens again.”
It happened again two weeks later with the same result and then began increasing to dozens of seizures a day.
At 4 ½, she was diagnosed with Lennox-Gastaut Syndrome (LGS), a severe form of epilepsy that develops in young children and often leads to lifelong disability.
The doctor said Savannah would not live to age 5.
Seizures continued to expand to hundreds a day.
Neither Tracy, a stay-at-home mom, nor Ruben, a deputy sheriff, had training or experience with serious medical conditions.
“It was terrifying and heartbreaking,” Tracy said. “We had no control. No one could tell us what caused this. All I heard was that they did not know and it made no difference. They gave us drugs that did not work.”
“As a mom, it hit me hard- mommy could not fix the ‘owie’. It was devastating to watch what this was doing to my child. It stopped her development. She was in the hospital all the time.
“I cried constantly for years.
“I never understood how my healthy child became epileptic and was having hundreds of seizures a day. And I wanted to know.”
Frustrated, in 1998 Tracy began researching LGS in the library, using the internet and reading books. She enrolled in science classes at Grossmont College. Ruben worked night shifts, which allowed her to attend day classes.
Although she was motivated by wanting to learn what caused Savannah’s epilepsy, Tracy also fell in love with science.
She enrolled in UCSD where she earned a bachelor’s of science degree in neurobiology in 2004.
In 2009, she earned a PhD from UCSD specializing in “how the brain develops.”
By this time, Savannah was 17 and, according to Tracy’s records, had experienced nearly 40,000 seizures.
However, despite 11 years of higher education focused on science, she still did not know what caused Savannah’s epilepsy.
The answer eventually came.
In 2010, Tracy was researching genetics under a post-doc fellowship at UCSD with Dr. Joseph Gleeson, a neurologist, when Gleeson suggested that they evaluate Savannah’s genetics.
After about a year of research, Tracy determined that Savannah’s epilepsy was caused by too much calcium entering her cells.
Savannah was given calcium-blocking medication in an attempt to stop her daily seizures.
Within two weeks, Savannah’s seizures dropped by 95 percent.
“She would have two or three seizures a week,” Tracy said. “It was the first time since age 3 that she wasn’t having seizures every day.”
Now 31, Savannah continues with calcium-blocking treatment and is thriving.
“Her personality emerged,” Tracy said. “She is sassy, spunky and funny.”
“She loves music, singing and dancing, swimming and water sports, puzzles and boys.”
Savannah earned a high school certificate of completion for life skills achievement in 2017 at age 22.
Today, Tracy lives in Tierrasanta with Ruben and Savannah. Their lives have significantly improved.
“We used to stay home all the time. We now go out to dinner, see friends and travel on family vacations,” she said.
Tracy is a well-respected neuroscientist and executive director of LGS Foundation (www.lgsfoundation.org), which is dedicated to helping families cope and promoting scientific research.
“Savannah’s story showed what is possible to change treatment modalities,” she said.
“It used to be it didn’t matter what caused the epilepsy. This research and new technology helped open up the concept of precision genomics medicine- finding what caused the epilepsy and using targeted treatment.
“As both a mom and a scientist I understand, in a profound way, that we must never give up the fight to stop seizures — and we never will.”
About this series
Goldsmith is a Union-Tribune contributing columnist.
We welcome reader suggestions of people who have done something extraordinary or otherwise educational, inspiring or interesting and who have not received much previous media. Please send suggestions to Jan Goldsmith at [email protected]
