By Guest Bloggers Jason & Sarah O’Neill, Parents of Alyssa and Founders of the AJO Forever Fund
I knew from the day Alyssa was born that she was given to me for a specific reason, a purpose, she had a destiny. I am not talking about being a celebrity, star or political leader. I am talking about something much deeper and more meaningful. We just never knew her purpose would come after her death, at such a young age. The impact she would make on our family, community and the world, not even being alive to witness it for herself.
This is our epilepsy story, the story of our daughter, Alyssa Josephine O’Neill. It was January 29, 2012. The day that would change the course of life as we knew it. It was the day that Alyssa suffered her first epileptic seizure. It was a Sunday morning. Alyssa had some girlfriends spend the night because they had a cheerleading competition the next morning. We heard the screams coming from our basement, and we raced down the stairs to see the most horrifying sight. There on the floor laid Alyssa, not breathing and a blueish/purple color. I thought right then and there, she was gone. I had never witnessed anything so scary in my life. After a few moments of begging, pleading and praying to God to let our daughter be alright, she started to breath again, but we knew something was very wrong.
Alyssa was taken to Children’s Hospital of Pittsburgh and was diagnosed with epilepsy. It is something we were all too familiar with unfortunately, because just weeks before Alyssa’s first seizure, her uncle who was 49 at the time, passed away suddenly as the result of a seizure. To say we were a bit frightened would be an understatement. Although the doctors and neurologists had assured us that epilepsy was treatable and nothing to be scared of, we knew otherwise. We made decisions based on the fact that seizures were in fact deadly. We did our research, we asked questions, we took precautions. Alyssa took her medications as prescribed, rested, remained drug and alcohol free, ate healthy and exercised and yet, even with all the precautions, she was taken from us too soon. In our home, while we were there. We felt so helpless and guilty. We wish everyday we would have done more, wished we would have created stricter guidelines, wish, wish, wish…. We only have one wish for Alyssa now, that she is safe and at peace.
As the days passed after the loss of our daughter, we didn’t know what to do. We just wanted to make sure Alyssa would never be forgotten. We wanted more people to know the facts about epilepsy. We wanted to do good in her name. We wanted to make her proud and finish the work she had just started. But how? This is where Alyssa’s spirit guided us as to what to do next. And it all started with a message she had sent me the night before she passed away. She asked if I would take her to Starbucks the next day before class at Penn State to try a Pumpkin Spice latte, since they had just come out and she hadn’t tried one yet. Since she could not drive, being that she hadn’t been seizure free for six months, I was responsible for getting her where she needed or wanted to be. I agreed to the simple request, because, frankly, it sounded good to me!
READ MORE ABOUT Our Epilepsy Story