My daughter, 27, had lived her whole adult life with uncontrolled epilepsy and PNES through a rare brain abnormality. This is a genetic issue she an I both share. She and I were closer than mother and daughter, our DNA was intertwined. Our lives were synchronistic one to another.
Thanksgiving day was one of the happiest of her life. Seizure free for hours she was able to book her first Thanksgiving Day turkey and invite family over for the celebration. She was most proud that her younger brother helped her with advice. The day was a success.
The following days brought stress and turmoil for her. For no reason, her seizures became worse. They had always been unpredictable but now they were growing into status epilepticus most of the time. Still a trooper, she treated herself at home knowing the doctors could do no more for her. Even her own Epileptologist told her meds could do no more for her.
Each day we would call each other and review over the days positive news and help each other with out seizure journals. Nov 29,2012 was different. I had just received a large donation for national Seizure Disorders Foundation that would provide a seizure service dog for her and we just got news of an actress wanting to become active in awareness. So excited I picked up the phone to call Jesy. She was calling me at that same moment. Answering the phone I learned it was not here, but her boyfriend. " Sit down mom" he calmly said. He revealed what happened and that she was gone from this life. After talking with the proper authorities about her passing we determined her passing was from SUDEP - Sudden Unexpected Death of Epileptic Patients. She had two severe back to back seizures and there was nothing anyone could have done.
I'm writing this today to show us all that life is gone in a blink of an eye. Love those around you every moment. For those wishing to show condolences, Jesys request is for all condolences be in the form of donation to National Seizure Disorders Foundation to help others live a higher quality of life and begin to understand SUDEP so that we can better manage SUDEP. nationalseizuredisorders
is the easiest way to show your concern for Jesy, for her family, and for her legacy.
Please let me know if you have questions. Please know we are all healing and are taking the rest of our lives to heal and help others heal.
Terrific Tonya Heathco, CEO
National Seizure Disorders Foundation