Living with Epilepsy – Terrific Tonya Heathcote

It’s that time again – our next personal life story.

Thanks to websites like LinkedIn, Twitter and Facebook, this social networking has been essential for so many people to connect and make themselves heard. They have been brought to a place where non-profit organizations, fundraising and advocacy in their countless forms have another marketing outlet and an opportunity to flourish.

This week Terrific Tonya Heathcote is sharing her story.

She and I connected last year through LinkedIn and after viewing the website for her non-profit organization I began to listen to the radio show which she hosts twice a week.  She has an open forum as well as having guest speakers and focusing on specific subject matter related to epilepsy.

Her story touches the stark realities of SUDEP, having epilepsy and how her experiences have brought her to the present.

 Tonya-Close-up-300x225

Welcome visitor,

Thank you for stopping in and getting to know me.

Originally from California I’ve enjoyed most of my life in Tennessee. Believe it or not, our first home in Tennessee had no electrical wiring and no indoor bathroom, just an outhouse!!
Life as a teen in Tennessee in the 70’s was a treat. I loved the experience.

As a young adult, life changed. Not for better or worse, it just changed. A chronic brain abnormality, Periventricular Heterotopia, became active in my life producing up to 150 seizures a month. Now I have hope. The National Seizure Disorders Foundation raises awareness and support for all who live with seizure disorders, (patients and their caregivers). For all who wish to help, support, or are in need of information, please contact me.

As a young adult I was blessed with three precious jewels, Jesyka, Cory, and Zack. Later in life, I married my life partner, Scott. We now enjoy the company of our dog, Tiny, our kids and our grand-babies, Ana and Colton.

Life in Tennessee is good. I love who I am, where I am, and what I do. Do you?

Additional special interests are:

  • Strengthening my mind with reading and networking.
  • Supporting others along their journey of life.
  • Experiencing the joys and wonders of our world
  • Accomplishing one goal at a time, it’s all in the baby steps

You’ll find I am an honest and open woman. Ask me anything and I’ll answer to the best of my ability. I practice a positive and peaceful walk daily and am a strong support to those in need.

SUDEP is prevalent but doesn’t have anywhere near enough exposure for people to know and learn about it.  Tonya’s daughter Jesyka passed away in November 2012 and this is her experience with SUDEP.

 Jesy-2009

Born with a rare genetic brain abnormality, Jesy was a uniquely bright, happy, and life loving child. At age 9 she developed seizures, several types, with no medical explanation. At age 15 diagnosis of the brain abnormality, PVNH (Periventricular nodular heterotopia) with seizures was confirmed and introduced into her medical file.

Regardless of hundreds of seizures monthly Jesy was determined to be as other teens and finish school. This stressed her to the point of severe seizures daily and hospital visits weekly to rehydrate her system.  In her freshman year the decision was made to take her out of public and private schooling. Suddenly she began to get “better”.

At age 16, after Status Epictetus, she reverted back to infancy and for one heart wrenching week was unable to do anything for herself.  She was as an infant. She would just look at her surroundings much like a newborn. The second week she began to form connections to faces. She knew her father and I were important to her, yet still she did not recognize us. Still no speech. Her facial expression was that of wonder and even insecurity.  Soon she would begin to form words just as a toddler. She felt the most at ease when her daddy was in front of her, she would cry for him and reach out for him, most of the time without words. Her “first” word suddenly became “Marna”, a child’s form of the word momma. She heard me speak the word momma to her so many times she began to connect the word to my face and her brain heard it pronounced “Marna”.  As she improved during week three, her brain function became that of a toddler. At age 16 she was learning to walk once again after having years of youthful exuberance. During the third week it was as if a switch had been turned on, she completely recovered with NO effects. As a bittersweet memory of the experience, she went on to lovingly refer to me as “Marna”. The word still rings sweetly in my ear.

Still managing up to six tonic clonic seizures a day and hundreds of other minor seizure types daily, she looked at her life with purpose. “There has to be a reason….” she repeated regularly throughout the next few years. She went on to live a life of discovery and as loving parents we gave her what was at that time her most important wish, to live independently. As she lived “out in the world” she desperately wanted the security and service of a seizure alert dog. It was not financially feasible at that time and soon we reached out to our local community for financial help to secure a seizure alert dog for her. No help returned from our local community and the decision was made to reach out to the nation. Still, funds were just trickling in. A pup was donated and a trainer found in preparation. We were $650 away from our goal.  After much time, we decided to change our plan and have someone living with her and her daughter now age 7.  NSDF went on to raise funds and build relationships for others to get service dogs… still, donations were rare.

Nov 29.2012 – After a couple years of consistent hard work to build funds for Jesy’s seizure alert dog, the final donation check came in the mail. I will never forget that day….

After returning from the mailbox, I excitedly reached for the phone and was surprised and the synchronicity, Jesy’s (Jesy & Ana) name and number were on the caller ID – SHE was calling ME! I picked up the phone and happily blurted out the good news, “WE DID IT, WE DID IT, NO MORE FEAR – JESY’S SEIZURE ALERT DOG IS HERE!” I squealed.  My excitement was returned with silence then suddenly uncontrollable sobs from her live in fiance, her daughter’s father. His words came out so fast they were all jumbled as I heard them, “I’m sorry, I’m sorry, she fell….she was alright….she seized and was on the ground….she….she…she…I’m sorry….mom, she’s gone….she was alone and she’s gone.”  Thinking he was shaken after a difficult seizure episode with her, I told him it would be okay just let her rest. He calmed his voice and said “No, mom, you need to hear me….JESY IS DEAD“.

Words cannot form to describe the feeling that fills a mother’s body in that moment. Not only did I lose my only daughter, my soul mate, to SUDEP but I lost her in the same moment we received the final funds for the dog that would have saved her life. Two weeks later…. the inspiration for Jesy’s Wish came to me helping me heal my grief.

What is Jesy’s Wish? I decided never again would a mother, or a family, go through SUDEP knowing funds for the life-saving service of a seizure alert dog came minutes too late… Jesy’s Wish was formed and grew as I recalled all her “wishes” during our journey with this life altering disease. To date Jesy’s Wish encompasses the resource connections and funding to ensure children and adults have the opportunity to gain from the services of their own seizure alert dog and seizure monitoring devices. She knew as I did, because together we experienced PVNH (a rare genetic brain abnormality) & seizures, people living with seizures and their family caregivers need resources, support, and financial help TODAY….the hope of a cure for future generations is a great concept, but lives are being lost TODAY. Jesy’s wish in general was that people living with seizures and their family caregivers get the funds needed to receive the resources needed to ensure higher quality of daily life and even salvation from SUDEP.  Give to Jesy’s Wish today.

You can find out more about Tonya, her organization and to make a donation to Jesy’s Wish at www.nationalseizuredisordersfoundation.org

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One thought on “Living with Epilepsy – Terrific Tonya Heathcote

  1. Thank you Freya for telling my story so beautifully and allowing your compassion to shine. Anyone readng this and wanting to reach me may do so by emailing Tonya Heathco at terrifictonya@nsdf.us I’m asking everyone to go to National Seizure Disorders Foundation at http://nationalseizuredisordersfoundation.org and five $1 or more through donation. Every dollar counts and the only way to show you the impact of your dollar is when you give. Experience Better Brain Health today ~ Tonya Heathco, Founder NSDF

    Liked by 1 person

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