Tracy Dixon-Salazar was a stay-at-home mother in San Diego and did not have a college degree when her daughter Savannah had her first seizure at age 2.
After that first episode, Savannah went about six months without seizures. But at age 3, they returned, this time with increasing frequency and severity. At age 5, she finally received a diagnosis of Lennox-Gastaut syndrome, a severe form of childhood epilepsy.
Over the years, the seizures became increasingly difficult to control. By the time Savannah was 18, she had tried 26 different treatments and could experience around 300 seizures a month.
Tracy decided that if she couldn’t find answers in conventional medicine, she would have to learn to look for them herself. She went back to school, immersed herself in biology and neuroscience, and about twelve years after beginning her university education, earned a doctorate in neurobiology at UC San Diego.
During her scientific research, Tracy took part in analyzing her own daughter’s genetic data. The team found variants associated with calcium signaling, a pathway that could have been contributing to Savannah’s seizures.
Based on those findings, Tracy and the medical team decided to try verapamil, a medication normally used to treat heart problems. In about two weeks, Savannah’s seizures decreased by approximately 95%, and that improvement lasted for years.
Verapamil does not cure Lennox-Gastaut syndrome nor does it work the same way in all patients. But Tracy’s story shows how a personal question—”Why is this happening to my daughter?”—can end up becoming scientific research.