Erik had his first seizure after a fever at 3 years old. According to his family there is some discrepancies on when his seizures started frequently. The one thing that we know is that it was in his early teen years. He started having seizures quite frequently despite medications. He gave up playing football and started managing football because coaches and doctors told him it was too dangerous to be on the field. Despite that he had to rearrange his plans it didn't stop him from working with the team. He had a really hard time with controlling his seizures in his late teens and early twenties. Erik went to college and worked with the football team for Ricks College for 3 years.
Erik met Kris when he went out with her roommate. Seven months after they stopped dating Erik asked Kris out. It was only a few weeks later they were engaged and married just 4 short months later. Minus a few bad days Erik's seizures were fairly controlled, one seizure every two to three years.
Kimmie was born in May 1998. She was a beautiful healthy baby. Despite mom's wishes she came exactly on her due date. From the beginning Kimmie had a mind of her own. Two and a half short weeks later Kimmie had her first seizure. Six months later she started having seizures regularly. Her seizures started with tonic clonic (grand mal) seizures and they lasted an abnormally amount of time (5 minutes to 90 minutes). Between hospital trips we spent a lot of our time relearning basic developmental skills. At five years old Kimmie had what some call a catastrophic seizure. She started seizing and we took her to the hospital. She ended up seizing for 6 hours straight. We are very blessed that Kimmie came back to us and that despite all of her setbacks we have our beautiful girl.
These prolonged seizure started our out of state doctor journey. We at first traveled to the Mayo Clinic in Minnesota. With some answers on some recommendations of some friends and the doctors going along with what we wanted to try we started a treatment of Stiripentol from France. It was our heaven sent medication. At the time that we started it than it hadn't been medically approved anywhere so the price was fairly low. When Stiripentol was European medically approved the price jumped 350%. We sold our home to afford this amazing medication. It gave us almost 3 years completely seizure free. We traveled to a Dravet Conference in Chicago. We still did not have an official diagnosis although Kris knew with the reaction to the Stiripentol that Kimmie had Dravet Syndrome was the cause of the seizures. Diagnosis came at that amazing conference. Two years later again by the help of some amazing friends, we found ourselves at the next Dravet conference in Connecticut. Our friendships there helped provide the relationships that Kris made to help make the Dravet Conference last August in Utah happen.
A little over two years ago Erik went from having one seizure a year to a seizure in the bathroom that changed our lives. Erik started struggling for over 9 months to return to "normal" life. Although he is still having seizures every few months he is encouraged by the possibilities of adding a VNS. He has not let his seizures from having a family, a job and doing his best to better the lives of others with epilepsy.
Kimmie was just granted her Make A Wish through the MAW Utah Foundation to go met Buddy the Cake Boss. She is currently having quite a few seizures a day (mainly myoclonic, complex partial and absence seizures). Despite having a lot of seizures (teenage life will cause that in Dravet Syndrome) she continues to educate about epilepsy. She has spoken to Governor Herbert, Senator Hatch, Representative Chaffetz, and many others about the importance of epilepsy.
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