However, the real awareness comes from the impact it has on people and the stories of those who struggle with seizures as well as their families. As many of you know, Livy had her first seizure the day she was born and continues to have them every day. She has had two brain surgeries but still takes five antiepileptic medications. We’re not sure of the side effects and the toll they are taking on her body. She can’t tell us how she feels.
Over the last several days that Allison has been away, I have spent morning, noon, and night with Livy. I have witnessed each and every seizure. Livy has changed once again and now has clusters at night. Within a half hour, she can have two dozen of them. They seem to start around 7:00 pm and continue for some time.
We have grown accustomed to saying that we feel fortunate because there are parents sitting next to the bedside of their kids in the hospital. One of the last resorts for uncontrolled seizures is to put the person into a medically induced coma. There is no guarantee it will help but the goal is to completely extinguish the electrical storm and to reset the brain. We have come very close to that point. It still amazes what we have to accept to be able to get through life.
While epilepsy is not as severe for everyone, everyone who has it is impacted in some way. There is uncertainty that goes along with not knowing when the next seizure will occur. Discrimination occurs in the workplace regularly. Kids get bullied in school. People lose their licenses. Perhaps the worst of all is the concern about SUDEP (Sudden Unexpected Death in Epilepsy). For these reasons and many more, there needs to be a greater understanding of what causes epilepsy. Today’s medications and devices treat the seizures instead of the underlying causes which in 2/3 of people is still unknown.
As Livy continues her journey and as our family struggles to control her seizures, I ask you take a moment and think about the 65 million people and their families who are impacted. Then get out and do something about it. For example, go to an epilepsy walk, spread awareness to help advance the cause, participate in Lemonade for Livy, or learn seizure first aid. You could even share this post and ask people to take a moment to read it. The best way to make a difference and to create change is not to wait for someone else to do it but to take action now. Livy and millions of others are counting on it!