July 22, 2014 – October 6, 2020
Diagnosed: April 17, 2020
Owen Petrzelka was a sweet and active 5-year-old when diagnosed with DIPG in April 2020. He longed to be a ninja when he grew up and trained regularly. He was a proud big brother to his sister and best friend Sydney and his brother Wyatt, who turned 1 the day after Owen’s diagnosis.
In the weeks leading up to diagnosis, Owen started exhibiting unusual behavior, like running into walls and stumbling on stairs. Soon, Owen complained that light bothered him and that he felt like a “bobblehead.”
An MRI and biopsy soon confirmed the unthinkable – Owen had DIPG, an incurable brain tumor with little hope. Owen declared that ninjas never quit and quickly started his treatment at Ann & Robert H. Lurie Children’s Hospital of Chicago, tackling thirty rounds of radiation like a champ.
In navigating what came next, Adam and Amanda consulted with many DIPG experts, including Dr. Koschmann and St. Jude Children’s Research Hospital. In the end, Adam and Amanda decided to forego a clinical trial, focusing instead on treating Owen’s symptoms and spending the summer creating memories for him, his siblings and those closest to him.
Always one to light up a room, Owen continued to spread joy with a contagious giggle and an unflappable appreciation for the life around him. “Making someone happy is our job,” Owen declared. He was wise beyond his years and stronger than any ninja the world had ever seen. DIPG took a lot from Owen, like his ability to walk and eventually to communicate like he had before, but his spirit stayed strong and laugh roared loudly until the very end.
Owen lost his battle to DIPG on October 6, 2020 at the age of six, less than six months from his diagnosis, but his message of spreading joy and making others happy will live on through so many.
