Mark’s Story
Mark Shaparin was born on September 9, 2013. Although September 9th is the most common birth date worldwide, Mark was far from ordinary.
Mark was truly a unique individual with a zest for life, love, and kindness. His glass was always more than half full, and he appreciated experiencing all that life had to offer. Sensitive and empathetic to people, animals, and the natural world, Mark had highly acute senses. He excelled in language and music, was his family's annual Easter Egg Hunt champion, loved to stop and smell every flower, play in every park, climb every tree, and was a huge foodie. His goal was to discover and experience everything the universe had to offer, and he had a real curiosity about learning and exploring outer space.
Mark gave the biggest, warmest, and most sincere hugs. He made you feel included, important, and heard. He exuded generosity both tangibly and emotionally — being a friend to anyone in need and always knowing how to make someone feel special. If he noticed someone struggling (and Mark noticed everything), he would be the first to offer his sincere help with his signature, big smile and huge, sparkling blue eyes. Mark truly cared for everything and everyone and cared very little for himself; mostly because he didn’t need much to be happy.
Mark could find joy and positivity in every situation and always wanted to make everyone around him laugh, smile, and have fun. He had a mature understanding of the world and a unique perspective about life at 10 years old. He would try to eat healthy (although candy was a weakness) and tried to develop good habits like exercise and “chill time.” He was intelligent and mature enough to make friends with the elderly and silly and gentle enough to play with babies and toddlers. He never spoke unkindly of anyone or anything. He was always a gentleman and had a great appreciation of life and all its tiny details. Mark valued making human connections and was always compassionate and generous to everyone, without expecting anything in return.
On April 5, 2024, Mark had his first known seizure. His parents took him immediately to the local emergency department where all tests were normal, and they were told to see a neurologist. Mark was seen by a pediatric epilepsy specialist two days later and was diagnosed with Benign Rolandic Epilepsy (also known as Self-Limited Epilepsy with Centrotemporal Spikes), a common night-time childhood seizure disorder — one that was supposed to go away in his mid teenage years. He was scheduled to undergo additional testing, but medications were not recommended. Mark was given an excellent prognosis, which was consistent with internet searches of his diagnosis on reputable websites. His parents, both medical professionals, were not aware or made aware of Sudden Unexpected Death in Epilepsy (SUDEP).
At the age of 10, Mark passed away in his sleep following a seizure. He was found by his parents on the morning of April 18, 2024. It was only his second known seizure. This is when his parents learned about SUDEP.
Mark was a beloved son, adored brother, the best playmate, a much admired student, and an exemplary friend. Mark was a lover of nature and nonfiction books, a Star Wars and Disney World fan, and a big foodie. Mark loved the creative arts and was a talented musician (double bass), artist, poet, and actor who loved performing in school plays. He was creative, smart, and wise beyond his years. He had endless curiosity and was an adventurer who had an amazing sense of humor and who was always happy, smiling, and optimistic. He discovered beauty in all things and truly appreciated life. His excitement and joy were palpable and contagious. He was awed by things most people do not even notice, and he inspired those around him to do the same. Mark knew what was most important in life: LOVE and KINDNESS. Mark was an angel who got lost and accidentally, somehow, wound up on Earth, and we are all so blessed to have known him.
If you have stories or photos of Mark that you would like to share, please email them to info@markshaparinfoundation.org. His family would love to see them.