Editor’s Note: The 2014 Winter Walk is this Saturday – January 18, 2014. The Walk is really two walks held simultaneously and the SouthPark Mall in Strongsville and the Great Lakes Mall in Mentor. Registration is still open for the Walks. The Dillon Family is a long time supporter of the Walk. They walk to support Macey. And her story was submitted by Grandma Thornton. Macey and her family will be at SouthPark Mall.
Macey is a strong, normal child on the outside, but inside her brain is very busy. In March of 2009, Macey had her first grand mal seizure. Her pediatrician felt this was an isolated occurrence, but a Sleep Deprived EEG showed she had Benign Focal Epilepsy, which is usually seen only during sleep.
In July of the same year, Macey’s seizure activity increased so that her neurologist placed her on medication which eventually stopped her grand mal seizure activity. However, during that summer we began to notice that Macey seemed to be very clumsy. She would often trip and fall over nothing. This could happen 30 times in a day! It was then that Macey was diagnosed with a rare kind of seizure called “drop seizures”. This is almost never seen in children with Macey’s type of epilepsy and her physician had never seen one like it. With medication change, her seizures were able to stop and the entire family was able to take a deep sigh of relief!
In 2010, Macey entered 2nd grade. The first couple months went well, but then she began to show extreme cognitive regression and poor memory. She also had sleep issues and napped frequently. Once again Macey was tested and the results showed another sleep deprived EEG. In April 2011 Macey was diagnosed with a rare form of epilepsy called ESES (Electrical Status Epilepticus during Sleep). She had continuous seizure activity for 85-95% of her sleeping hours, as well as some during the time she was awake. As a result, Macey was not moving short term memory into long term memory so what she learned one day would be forgotten the next day.
Again Macey rallied. With additional medication and special education intervention, Macey has improved tremendously. Today, she plays goalie for a traveling soccer team, plays basketball, and has many good friends. She is such a joy! We love her attitude and strength. Her parents and brother support her all the time. And, recently, Macey had another EEG and discovered she is now down to having seizures 25% of her sleep time!
We support the Epilepsy Association Winter Walk because the Association services help families cope with epilepsy. We invite you to join us on Saturday, January 18th. This is the one event where the entire Epilepsy Family – children and adults, their families, friends and care-givers come together to share our stories and support each other.