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After the loss: SUDEP from a family perspective

Tonya’s Story

Around the year 2000, my daughter Jesy and I were diagnosed with rare genetic forms of Epilepsy. Although our doctor was one of the best in the country and modern medicine was exploring every angle to find solutions, several years later our diagnosis was classified as refractory, or medically uncontrolled, and our doctor spoke to us about SUDEP ( Sudden Unexplained Death in Epilepsy).

After the initial conversation about SUDEP with our Epileptologist, we agreed a healthy and wise move would be to discuss our “end-of-life” plans with each other on a regular basis, around Thanksgiving every year. Thanksgiving was a good time because the month was observed as one of Epilepsy Awareness and SUDEP was now a big part of our Epilepsy journey. Thanksgiving was also a good time because the conversation gave us so much more for which to be thankful during that time of year. We always thought, because I was oldest and had experienced more seizures for many more years, SUDEP would steal me away first. SUDEP is a thief, a bold thief with no remorse or concern for one’s desire to live. SUDEP steals in the blink of an eye or release of a breath. November 2012, SUDEP stole my daughter moments after my last happy words with her.

I miss her physical body and still shed tears from time to time. But, surviving SUDEP in the way that I have has made me stronger and helps me carry on to live my purpose which was one of her last wishes for me. Jesy hoped that I would live my purpose of sharing wisdom of my life experiences through words, pass them on to public ready to take action to become powerful, responsible, abundant and prosperous adults.

Whether you or a loved on carries the diagnosis of Epilepsy, remember, life is too short. The time to stop fighting to everything ( even awareness) is now. The time to care for one another and ourselves is now. The time to increase our self empowerment and learn more about taking better care of ourselves is now. Develop a growing gratitude for every moment, even the uncomfortable moments. These were some of the words and last wishes of my daughter Jesy, for the public living with a diagnosis of Refractory Epilepsy.

Talk about it

Remember, having a diagnosis of epilepsy may or may not mean you are at risk for SUDEP. So, be courageous and talk to your doctor. Then build on that courage and continue the conversation with family members and friends.


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