My son Nicholas was diagnosed with epilepsy when he was 6 years old. It was a life altering diagnosis, not for just Nicky but the whole family. As we learned more about the condition we adjusted our lives in order to keep him safe. No more baths or swimming or even riding his bike unless someone could be right next to him.
Epilepsy robs people of their normalcy and peace of mind. As Nicky got older the seizures seemingly got worse in intensity. We were able to gain control for a number of years but once puberty hit he began to have breakthrough seizures. Ultimately one of these breakthrough ones was what took him away from us.
There is not a day that goes by that I don’t replay that day in my head wondering what if I had heard him fall, or what I could have done to protect him from this. It’s absolutely gut wrenching as a parent. I hope that a cure can be found to keep other families from experiencing what we have. While it wouldn’t bring back my Nicky it would save other families from this horrible outcome and that is why I hope a cure can be found.