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Jacob Jacob
1996-2018

Jacob passed away in January 2018, from SUDEP, a complication of Epilepsy. This is Jacob's life story. It is about who he was, his personality, his family life, and his interactions with the world. He is one of the many faces of SUDEP. To learn more about Epilepsy and SUDEP, please check out these sites.


Curly Hair Jacob was the baby of the family. His father was in the Air Force and his mother managed a small ice cream shop. Jacob's siblings, two brothers and a sister, were all in school by the time he was born. He also had an angel brother, Matthew, who was lost at 14 weeks gestation. Jacob's family was ecstatic when their beautiful rainbow baby finally arrived. His mother quit her job so she could stay home with him. His siblings adored him and he could often be found curled up with one of his brothers watching television or taking a nap.

By the time Jacob was two, he had a head full of crazy curls. As he grew older, people would routinely comment on how beautiful 'she' was. Jacob was very unconcerned with this mistake and never got upset. His father eventually insisted on a haircut. Jacob was about five when his mother finally took him to the salon. They looked through several books to find the right hair style. After looking for some time, she asked him which hair he liked best. He immediately pointed to his head and said, "I like this hair". Needless to say, he went home without a haircut.

Halloween Jacob was diagnosed with epilepsy at the age of seven. Due to his condition, his parents pulled him from public school and continued his education at home. He was very intelligent and did well in his studies. He had an incredible memory, needing to read something only once to retain the information. After completing his high school work, he earned an Associate's Degree in Liberal Arts with an emphasis in Administrative Management. He earned most of his college credits by taking DANTES or CLEP tests. Testing out of classes allowed him to continue studying from home. His final goal was to earn a Bachelor’s Degree in Business and Accounting.

Although Jacob was well versed in history and science, he loved science fiction and fantasy. He read voraciously, as did his whole family. They often read the same books and there was always excitement when a favorite book was turned into a movie. Discussions of book vs. movie were a never-ending pastime for them all. Jacob also loved gaming. He played Magic and Mario Cart with his siblings, and Chess with his dad. Jacob and Nephew He created his own board games, drew pictures, and wrote stories. Halloween always saw him dressed as a favorite movie or game character. One of his favorite games was Warcraft. He played with his parents, siblings, and even some of the in-laws. He often entertained his family with stories from his vast knowledge of the game's history and lore.

Jacob loved his family and was very excited when his siblings began to have children. When his first niece was born he broke down and sobbed. His mother was perplexed and asked him what was wrong. Through his tears, he asked, "What if she has seizures too?" His worry faded as more children came, all whole and healthy. As the family expanded, they began gathering at Grandma's house every week. Jacob always had a child or two curled up next to him, or several of them piled atop him on the floor.

If there wasn't a small child following Jacob, there was always a dog. Jacob had a way with animals and his family often referred to him as the dog whisperer. For fourteen years, his beloved fur brother Jack watched over him. When Jacob was still attending public school in first grade, his mother would take Jack to pick him up every afternoon. Jack never failed to come running with his leash ten minutes before it was time to go. After Jack Dogs passed, Jacob got a new furry sister, Beastie. She too had a knack for knowing when Jacob should be returning from his weekly Magic game. She would start to pace as the time got near, and then explode into fits of wiggles and barking when the phone rang, signaling that Jacob was ready to be picked up. Another very well trained dog, Pepper, suprised her owner when she jumped on the sofa and plopped down in Jacob's lap on their first meeting. Later, Pepper helped Jacob propose to her owner.

As Jacob became a teenager, he began venturing out into the world more. He was very social, and fit easily into any type of gathering. He had a particular knack for befriending those who were struggling. Regardless of the struggle, Jacob was always there with a listening ear. He encouraging others to rise above bad situations and made them feel important. One of Jacob's close friends once commented that he was "one of the most gentle souls I’ve known." Another noted that Jacob was kind to every one, even those he played against in competitions. He "offered time to help others improve and get better not only in Magic but in life".

Even though Jacob loved hanging out with his friends, he maintained a close relationship with his parents. He spent many months studying with his father while they were both working towards their college degrees. Even after Jacob was married, they would spend hours sitting in his dad's truck and talking. He trusted his father's advice and always sought his opinion on life decisions. Jacob's mother was very protective of him and since Jacob didn't drive she was his chauffeur. While she tried to be discreet, Jacob never seemed to mind her presence. When he attended his first church dance, his mother waited for him to meet up with his friends before she went inside. She quietly found a chaperone, explained Jacob's seizures, and located a room where she Jacob could read until the dance was over. Halfway through the dance, she heard noises in the hallway. In what was to become a weekly ritual, Jacob flung open the door, bringing with him a gaggle of giggling girls. He proudly introduced them all to his mother, who was quite surprised. After hugs all around and a short visit, the group returned to the dance with more hugs and cries of "Bye, Mom!"

In January of 2016, Jacob met his future wife. They had a whirlwind romance and married in the fall. Shortly after their honeymoon, Jacob started his first job. Jacob and his wife bought a small home the next fall, and on Christmas morning they announced that they were expecting their first child. Just over two weeks later Jacob suffered a seizure that resulted in respiratory and cardiac arrest. The doctors were unable to bring him back. Eight months later, Jacob's son was born. He is healthy, beautiful, and has a full head of dark, wavy hair.

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