Halyn Murtha is 4 years old, and was diagnosed with epilepsy when she was just a year old. Halyn had a severe fever when she was just 1 month old, and we believe this may have been the initial trigger. She deals with myotonic, partial complex seizures where her body will stiffen up in a repeated jerking motion.
Initially, we didn’t recognize her actions as seizures, as they would only occur occasionally and not for a sustained period. Eventually, we videotaped these “episodes” and sent them to her pediatrician who recommended we see a pediatric neurologist for an EEG, which ultimately confirmed her condition.
After her diagnosis and initial medication, the seizures seemed to be under control, which brought a certain sense of relief. This was short-lived as her seizures returned with a vengeance, eventually getting to the point where she was having over 20 seizures a day. Her seizures were so severe that she would often pass out.
Halyn has been on a variety of medications, including Depakote, Keppra, Topomax and Lamictal. In addition, we tried a modified Ketogenic diet which didn’t have any impact on her. Currently, her seizures are largely controlled through a twice daily dosage of Lamictal. However, over the past month she has had a number of breakthrough seizures which may require yet another change.
As a result of her epilepsy, she suffers from severe delays in speech, behavior and cognitive development. She currently receives speech, occupational and music therapy services. Although she has a long and challenging road ahead, when compared over time, she is making progress, and this gives us hope.
We became aware of the Epilepsy Foundation of CT by searching online for information and support. After taking advantage of some of the information and resources available on the website, we noticed the opportunity to volunteer for the foundation, and wanted to do anything we could - no matter how small - to help our daughter and those coping with epilepsy. We appreciate that there is an organization to help educate the public and support individuals and families coping with epilepsy.
Halyn is a beautiful, happy girl with a family that loves and supports her. One small example of her progress, which manages to melt away the frustration of 4 years of dealing with epilepsy, was finally hearing her say, “I love you” this past year. A priceless moment that we cherish every time we hear it.