We remember Alyssa’s first seizure like it was yesterday, that Sunday morning when we ran down the basement stairs to find Alyssa convulsing on the floor with her terrified friends around her. It was after that insanely scary seizure, an ER visit, an ambulance ride to Children’s Hospital in Pittsburgh, and lots of worry that we began to learn all about seizures and Epilepsy.
Obviously we had so many new questions, so many new worries. We made sure she strictly followed her medication schedule, maintained a proper diet, and got plenty of rest.
Over the next 18 months we had our ups and downs with Alyssa’s Epilepsy. We had periods of breakthrough seizures, followed by periods of four, five, and even six months seizure free. Unfortunately Alyssa’s months of being seizure free were always cut short by another unexpected breakthrough seizure.
There was no rhyme or reason. We just couldn’t seem to figure out her trigger, and, as it turns out, she may have had many. We knew Epilepsy could be fatal, We understood that driving could be deadly, we knew swimming alone could be deadly….we just didn’t think that her life could be taken so soon, in our own home, even with all of the precautions we had taken to keep her safe.
“I may have Epilepsy, but that does not define me”
Regardless of all of the breakthrough seizures, all of the visits to the neurologists, all of the rides to and from school, all of the things she watched her friends do that she couldn’t, even after all of that, the person that was the most positive and happiest was always Alyssa.
One thing that Alyssa always said about her Epilepsy was that “I may have Epilepsy, but that does not define me” Alyssa defined herself by her actions, which were commendable to say the least, and showed maturity and fortitude. To say that Alyssa is missed is, by far, the understatement of the century.
The morning of Sept 4th is officially the worst day of our lives. We wont get into the details of that morning, just know that what we witnessed and had to do will haunt us for the rest of our lives.
Faced with the “where do we go from here” moment, the first couple days just kind of floating by. Most of those days there were tons of people at our home trying their best to help out and console us as much as possible. All we wanted to do was lay in bed, and that’s exactly what we did for those first few days.
#AJO is born
After the funeral we went to visit Alyssa at the mausoleum, and as we were leaving, Sarah showed me the last message that Alyssa had sent her. It said, “Mom, can we get those (Pumpkin Spice Lattes) tomorrow, pretty please?” Sarah looked at me and said “if our baby can’t enjoy one, then maybe others can enjoy one in her honor……and that is where #AJO started.
We headed to Starbucks and shared some Pumpkin Spice Lattes with some unsuspecting strangers. We can only imagine what the manager at Starbucks was thinking as a sad looking couple dressed in all purple asked to speak with him.
He was gracious enough to hear our story and was so moved by our request to buy the next 40 PSL’s for the next 40 patrons. He was speechless for a moment and then repeated our request back to us just to be sure he heard us correctly.
He then said “hold on while I speak with my other manager.” He came back out and told us that they were so moved by our story and our gesture that they would match with all of their employees free coffees during their shifts that day. Those 40 PSL’s just turned into 90 PSL’s in a matter of seconds.
We only asked that they use the purple Sharpie we handed him to write #AJO on each cup that was given to the customers and to please share Alyssa’s story with them and ask them to look it up on any of the social media pages that were already starting to get attention. At that point, Sarah and I walked outside and made a quick video to let people know they were welcome to join us in paying it forward for Alyssa and Epilepsy Awareness.
Paying it forward around the globe
Over the next few weeks we started receiving messages, pictures, stories, and videos of people paying it forward all over the country. We watched the movement spread from Erie Pa, to Pittsburgh, Cleveland, and Buffalo and then all over the country. Each and every kind gesture, each pay it forward, each random act of kindness that was done, was done so in Alyssa’s name and it was showing no signs of slowing down.
Every time #AJO was written on a coffee cup, donut box, or receipt, it meant there was a another person that was moved enough by Alyssa’s story to submit these pics and stories to us. The beauty of all of these submissions was that every time this happened it also meant one more person took the time to learn just a little bit about Epilepsy.
As the #AJO Movement continued to grow, so did the audience. We started receiving hundreds and hundreds of messages, pictures, questions, and comments per day. Then, as we filtered through all of the submissions, we noticed we were getting #AJO submissions from other countries throughout the world. We were amazed. How could it get any better than a #AJO picture sent to us from Sydney, Australia?
Over the course of two weeks, we received #AJO followers and submissions from every state in our country as well as Canada, Mexico, Sri Lanka, Scotland, Iceland, England, South Korea, Afghanistan, China, Norway, Spain, India, Jamaica, Ireland and Germany, just name a few.
It didn’t take very long for some of the national media outlets to start calling us for the story. Needless to say, once the #AJO story started receiving national attention and the Associated Press released the story to every media outlet in the world, the #AJO Movement was in full swing. Within a matter of a few weeks the #AJO story was featured on all local media outlets, including The Today Show, MSNBC, CNN, ABC News, The Huffington Post, Ellen, and the Inside Edition.
After the whirlwind of media coverage, we knew we had to get to work. It was time to starting making Alyssa’s legacy about more then just coffee. We knew right away that we wanted to raise awareness, help people with their travel needs, provide seizure detection monitors to those in financial need and advocate. The best way to do this was to start a non-profit. So, that’s just what we did. And two years later, to the day of Alyssa’s passing, the AJO Forever Foundation was approved as a 501(c)(3) charity.