My story with epilepsy began right after my daughter turned two years old. She suddenly started turning blue, staring, and became lethargic. Over six months of testing, the episodes went from once every two weeks to 9 per day. Leighanne’s seizures presented as several other serious health problems, so it wasn’t until a scheduled inpatient stay that a neurological team decided to take a look at her case. We had our answer within 24 hours.
At that time, we went through 4 more days of testing and were taught seizure protocol. We were given information about SUDEP and sent home with the expectation that the medication should work. That is not Leighanne’s story. I watched as she failed 8 anticonvulsant medications in the first 3 years and started to lose her cognitive abilities rapidly. My husband and I were told our daughter was critical and needed to go through a brain surgery evaluation. We agreed.
For the next eighteen months, Leighanne and I went to three different hospitals for opinions. She spent countless nights inpatient in EMU’s. We also lived 8 months in the Ronald McDonald House so she could receive cognitive therapy at the best pediatric facility available. She missed Kindergarten and hospital life became normal. At the end of the eighteen months, she was not a surgery candidate and we were ultimately told there is nothing else available for our daughter. Her diagnosis was changed to Bilateral Localization-Related Intractable Epilepsy. She has three focal points.
I am an ambassador for MES because the voices of parents and girls fighting for answers need to be heard. We need to keep searching for answers to help our girls succeed and thrive. We must advocate and work with the medical teams to find a solution. Above all, we need research for those girls who don’t have an option left and our girls need to know we will never give up.