Sadaya
Burnett
Foundation

Our Story

Our family's journey with epilepsy began when Sadaya was diagnosed at the age of 6. We were overwhelmed with shock and fear, but as a family, we made a commitment to learn as much as we could about her condition and do everything in our power to support her.

Sadaya was diagnosed with absent seizures, and we were reassured that there was a 90% chance she would outgrow them as she matured.

Then on Christmas Eve, while staying at her grandparents' house, Sadaya experienced a different type of seizure—tonic-clonic. This was a turning point that led to more tests and a change in her medication.

We were hopeful, but after another year, Sadaya began to experience new challenges. She had a seizure in the shower and started showing involuntary hand movements. Once again, we turned to EEGs and medication adjustments, but the seizures continued.

This gave us some relief for about eight months, but then Sadaya experienced her first Grand Mal seizure.

Our local doctor wisely recommended we seek a second opinion from an epileptologist. We traveled monthly for EEGs and medication adjustments, and during this time, the doctors made it clear that Sadaya wasn’t likely to outgrow her epilepsy; instead, we would need to focus on managing it with medication and diet.

We had long suspected that Sadaya’s Grand Mal seizures were connected to her menstrual cycle. Her doctor agreed that this could be a possibility, and we planned to monitor her during her next cycle.

Tragically, Sadaya passed away during that very month, and we were never able to make the adjustments we had hoped for.

Sadaya passed away on May 14, 2024, from Sudden Unexpected Death in Epilepsy (SUDEP). Despite all the medical appointments and consultations, this is something no one had ever warned us about. It’s not something that should be used to frighten patients or families, but simply knowing about it would have given us more understanding.

Although our epilepsy story doesn’t have the happy ending we had hoped for, we are determined to honor Sadaya’s memory by helping others facing similar challenges.

We believe that by sharing our journey, we can raise awareness and support those who need it most.

This work would have made Sadaya proud, and it gives our family a way to continue her legacy and make a difference.

At the Sadaya Burnett Foundation, we are dedicated to empowering individuals and families affected by epilepsy through education, advocacy, and awareness. We strive to dispel misconceptions, amplify voices, and provide vital resources to navigate epilepsy with confidence and compassion.

Our goal is to replace stigma with understanding, fear with knowledge, and isolation with community. Through education and awareness, we foster a more informed, supportive world—one conversation, one lesson, one life at a time.