Despite uneventful pregnancies and deliveries, Tessa and Colton both began having seizures the day they were born. For a decade, the underlying cause of Tessa’s seizures and developmental problems remained unknown, despite consulting dozens of specialists across the country and trying dozens of medications. Tessa continues to have hundreds of seizures daily. When Colton was born in 2013 and also began having seizures, our team of experts realized the problem was genetic and were able to isolate a genetic marker for the disease: SLC13A5. Finding a genetic marker is a huge step in finding a cure.
The Nye family started TESS Research Foundation in order to improve the lives of those living with the genetic neurological disorder SLC13A5. TESS Research Foundation aims to raise awareness, unite families affected by the disease, and fund research in order to better understand this disease.