I decided never again would a mother, or a family, go through SUDEP knowing funds for the life savin

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Born with a rare genetic brain abnormality, Jesy was a uniquely bright, happy, jacob jacobsen and life loving child. At age 9 she developed seizures , several types, with no medical explanation. jacob jacobsen At age 15 diagnosis of the brain abnormality, PVNH w/ 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 jacob jacobsen and private schooling. Suddenly she began to get “better”.
At jacob jacobsen age 16, after Status Epictetus, she reverted back to infancy and for one heart wrenching week was unable to so anything jacob jacobsen 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 connection to faces. She knew her father and I were important jacob jacobsen to her, yet still she did not recognize us. Still no speech. Her facial jacob jacobsen expression was that of wonder and even insecurity. Soon she would begin to form words as any toddler. She felt the most at easy 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 childs form of the word momma. She heard me speak the word momma to her so may times she began to connect the word to my face and her brain heard it pronounced “Marna”. jacob jacobsen 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 as if a switch had been turned on, she completely recovered with NO effects. jacob jacobsen 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 6 Tonic Clonic a day and hundred 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 an a trainer found in preparation. We were 650 dollars away from our goal. After much time, we decided jacob jacobsen to change our plan and have someone living with her and her now age 7 daughter. NSDF went on to raise funds and build relationships for others to get service dogs…still, donations were rare.
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 daughters father. His words came out so fast the were all jumbled as I heard them “I’m jacob jacobsen 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”. jacob jacobsen
Words cannot form to describe the feeling that fills a mothers 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.
I decided never again would a mother, or a family, go through SUDEP knowing funds for the life saving service of a seizure aler

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