On September 6, 2022, my family and I donated the partial proceeds of a fundraiser we sponsored in honor of our son Nicholas, who died of SUDEP on August 11, 2017, at 23 years of age. Today’s total, from Venmo and check donations, was $1,188. And through our event Facebook link, we donated $1,645 directly, for a total of $2,833. My husband’s employer Verizon matched our donation. Additional funds are still trickling in. This may not seem like a lot to such a big organization, but to the small group of participants, it is a treasure that we hope will make a difference.
I wanted to share with you our story of Nicholas and his experience with epilepsy, in addition to the small event we have held in his honor each year since he passed. First, the event, which is the main source of our donations.
Nicholas loved superheroes, Captain America, in particular. So much so, that his house theme at Niagara University was “Marvel House” his junior and senior years. Each of his housemates adopted a Marvel superhero alter ego, and they referred to him as “Cap,” for Captain America. Nick’s campers at the YMCA each summer shared in his love of superheroes, and enthusiastically participated in Superhero Week each summer by dressing up as their favorites. Nick was always Captain America.
Each year we hold a baseball/wiffleball game in Nick’s honor. Friends and family participate, and it’s a way for all of us to commune and celebrate the bright light that was our Nicholas. In 2018 and 2019, we reserved a baseball field in our town and played actual baseball. Nick had played on that very field and hit many homeruns there. Due to COVID restrictions, subsequent years proved more difficult, but we managed to cobble together enough people to play wiffleball in our backyard (another place Nick hit multiple homeruns!).
This year we added a donation component, and our friends, family, and coworkers were eager to help. We hope to grow this little fundraiser in the coming years. On Saturday, August 13, 2022, we came together to play wiffleball in our backyard. It was a large group, and the bench and outfield were stocked with players! He would have loved it. I hold in my heart that he was with me when I got a decent hit my first time at bat!
After the game, we had food catered. If you’ve ever been to Rochester, NY, you may have heard of the delicacy known as “garbage plates,” an absolute favorite of Nick’s. And so, in his honor, we all piled our plates with macaroni salad, potatoes, burgers, hot dogs, grilled cheese, hot sauce, etc. Again, he would have been in his glory. We all are certain that this was a perfect tribute to Nicholas.
Nicholas had his first grand mal/tonic clonic seizure when he was four. He’d spiked a fever, and the doctors in the emergency room attributed it to that. When he was seven, he had another, when he spiked a fever again. He began seeing a pediatric neurologist then, who cautiously recommended that we watch him and see if he had any seizures that were not provoked by a fever. Nick was an energetic, whimsical, and mischievous child. There were times when it seemed he’d spaced out, and we just attributed it to his personality. Later, we realized that he was having absence seizures. He started medication, and all was well—just the occasional absence seizure. He played baseball, swam with the varsity team for six years, and was voted homecoming king his senior year of high school.
As he grew, dosages became more challenging. When he was a sophomore in college, his seizure type shifted. His absence seizures seemed to morph into a vocalization, which he’d mask as a sneeze around people he didn’t know. And then the grand mal/tonic clonic seizures returned. He was a college student who didn’t always get the sleep he needed and probably messed up dosages. That contributed to more seizures. Nick was active in Niagara University’s chapter of Active Minds, an organization that promotes mental health. He was chapter president his senior year.
He graduated from Niagara University with a B.S. in Psychology, with hopes to become a school counselor. That fall, he began his post-graduate work at Canisius College. The seizures were a common thing. His roommates were all aware and knew what to do. Nick tried to maintain his independence, and we tried to respect that, but it was heartbreaking to watch him go through it.
He returned home and worked his fifth summer at the local YMCA as a kids’ sports counselor. He slept in the bedroom closest to us so we could help him should he need us. We were vigilant but balanced the tendency to hover over him with his need for independence. He was beginning to resent his epilepsy, but retained his whimsical and kind personality. The vocal seizures were common. He had a grand mal/tonic clonic seizure once at lunch-time, but not in the presence of the campers. He took the opportunity to explain to coworkers and campers what epilepsy was, telling them it was just a thunderstorm in his brain. He was a stigma fighter, always looking for ways to normalize epilepsy and mental health issues.
Toward the end of that summer, just before leaving for his final post-grad year, as he was staying a few minutes away at his grandmother’s home, watching her dog while she was away, Nicholas had his final seizure just before going to bed. He’d watched the Yankee game and taken his pills. He had a call with his girlfriend scheduled. From what we can tell, the seizure caused him to fall and he never came out of it.
We love him and miss him so much, and constantly wonder what he’d be doing now, as we watch his peers move on to the new experiences of adulthood. Sometimes it’s hard to believe he’s gone—his presence was so powerful. He would have been an excellent school counselor, and the world is measurably worse without him.
Thank you for your work to gain more understanding of epilepsy and to one day prevent it from having the impact it had on Nicholas.
In memory of our beloved Nicholas,
Cathy, John, Caitlin, and Eric Albano