A Mom’s Journey to Understand Her Daughter’s Rare Disease
November 1, 2021
LGS Foundation offers timely, impactful support programs for patient families navigating the LGS journey.
Tracy Dixon-Salazar knows firsthand the devastating effect of Lennox-Gastaut Syndrome (LGS) — her daughter Savannah developed it at 5 years old as a result of uncontrollable epilepsy, which began when she was 2. Having to do her own research to find answers, Tracy went back to school to receive her Ph.D. to help her understand the books and articles she was reading.
During her studies, Tracy did genetic sequencing on her daughter and found the cause of her unrelenting seizures. As a result, Savannah had a 95% reduction in her seizures and regain the ability to walk and talk. This is not the outcome for most patients, as access to genetic sequencing is limited, the disorder is resistant to most therapeutic options, and no cure exists for patients.
We also traveled to NYU’s Comprehensive Epilepsy Center to meet with Dr. Orrin Devinsky to learn more about the cause, diagnostic features, and what’s on the horizon for research and clinical trials.
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