I am running to Protect Kids with Epilepsy

To our dear family and friends,

As you know, our brave, funny, sweet, courageous son, brother and friend John Michael Vassallo lost his life to SUDEP (Sudden Unexpected Death in Epilepsy) on September 29th, 2024. Johnny was diagnosed with epilepsy at the age of 4, and despite having to deal with increasing seizure frequency and intensity as he grew, he never let his epilepsy define him. He made great friends at school, participated enthusiastically at Special Olympics, and excelled as a barista as part of the Brew Crew. In his 22 years, Johnny travelled to 32 states, 17 countries and 5 continents and was always looking forward to the next adventure.

In recent years, Johnny was having increasingly more seizures throughout the day and night, which required more intensive care and monitoring. He had not had a seizure free day in the past 10+ years despite trying over 30 different medications, combinations of medications, and special diets. While he was frustrated by his epilepsy he did not lead a limited life. As was his way, Johnny handled his condition with grace and a sense of humor. He was incredibly kind and empathetic to everyone he encountered.

On September 28th, Johnny had a perfect day - spending time with family and friends, playing games, eating his favorite foods, watching a movie, and listening to music. We are grateful to have been with him throughout the night and the morning, and are grateful that he did not suffer.

As we navigate our way through our new reality, we realize how big our “village” is and feel so supported by all of you. Johnny was the lovely person he was thanks to a big brother that he wanted to be like, a little sister that he wanted to stay ahead of, and a strong family that treated him as a valuable member of the group. Further, he had a network of people at his school and his activities that quickly became part of our extended family.

Brett, Carol, Charlie, Sydnee, and Lydia have decided to run the Chicago Marathon in support of the Danny Did Foundation. Danny Did helps to raise awareness about SUDEP and provide education and support to families, organizations and medical professionals in an effort to prevent it. We hope that training for the marathon together will not only help us cope with our grief but also create something positive from it - if we can help other families prevent a devastating outcome it would be an incredible legacy in memory of Johnny.

Love, The Vassallo/Ellman Family

Thank you for considering a donation to support our 26.2 mile Chicago Marathon run dedicated to those facing epilepsy.