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    TERRIFICTONYA   8,307
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Nov 29.2012 - SUDEP swept through Our Lives


Tuesday, December 25, 2012

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
foundation.org/donate-for-
jesyka/
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.

Peace&Power,

Terrific Tonya Heathco, CEO
National Seizure Disorders Foundation
<link>http://nsdf.us/ <link>
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  Member Comments About This Blog Post:

TERRIFICTONYA 12/28/2012 2:10AM

    Thank you for your words of comfort. Knowing I have friends for support here on SP helps with healing as does reminding myself everyday that she has Eternal Freedom from seizures, pain, and stress.

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LADYVOLSFAN1954 12/26/2012 1:47AM

    I am so sorry for your loss. My late husband had seizures but a massive heart attack took him from me. Alot of people have no idea how serious seizures can be. Keeping you in my prayers.

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TERRIFICTONYA 12/25/2012 11:26PM

   
I too have enjoyed a wheat free and caffeine free diet as she had also. With our seizure disorder it made a difference but not enough to help us really gain control. I appreciate your comment and look forward to learning more about you. Have you the positive support you need for your seizure disorder? I have a team here and a private group on FB as well as giving one one one sessions over the phone through National Seizure Disorders Foundation. Let me know when you are ready and I will point the way. Thank you for your comment.

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3G1RLS4ME 12/25/2012 10:48PM

    So so sorry for the loss I had myoclonus since I was 19 until July of this yr. when I tried a gluten free diet. I'm 31 yrs old and I was on the strongest anti epilepsy meds and it wasn't working then my mil read about the wheat intolerance and within 3 weeks it stopped all together as long as I stay away from gluten and caffiene I don't lose control of my body. I know it's too late for Jesy and I'm so sorry about that but if others new about the wheat body connection maybe this can occur less

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