Jaxon Buell, the courageous boy born with a severe brain malformation, has passed away at the age of 5. Since his birth on August 27, 2014, Jaxon captured the world’s attention and earned the nickname “Jaxon Strong” for his unwavering determination to hold onto life, despite missing a significant portion of his brain. On April 1, Jaxon peacefully passed away in North Carolina, as confirmed by his parents.

Jaxon was born in Orlando, Florida, with a rare condition called microhydranencephaly, which severely impacts brain development. Approximately 80% of his brain was absent, with the cerebellum—the region responsible for movement, coordination, and balance—being the most affected. Medical professionals believe that Jaxon’s brain stopped forming a few weeks after conception, leading to his unique condition.

During the pregnancy, no complications arose until the 17th week when an ultrasound revealed the absence of part of his brain. Subsequent diagnostic tests provided further insights.

Brandon Buell, Jaxon’s father, aged 35, recounted the final moments with his beloved son. “He passed away in my arms, surrounded by his parents and family who loved him dearly. We offered him comfort and endless hours of snuggling during his last days,” Brandon shared. “Ultimately, Jaxon’s passing occurred when his body and organs ceased to function, as often happens to children like him. It had absolutely nothing to do with COVID-19. From the beginning, we were aware that this was a possibility; we just didn’t know when,” he added. Recently, as Jaxon’s health deteriorated, he entered hospice care, and the family prepared to bid him a heartfelt farewell.

“Jaxon’s legacy is defined by his strength and his remarkably sweet spirit. He made me, his mother, his family, and all those who learned from his story better people,” Brandon expressed.

“There is a miracle within Jaxon’s story, and we want other families to understand that even in the darkest of circumstances, every life should be celebrated, cherished, and treasured,” he emphasized. Although he was tiny and his head hadn’t fully developed, his parents focused on his beautiful bright eyes and his undeniable will to live.

Jaxon spent three and a half weeks in the neonatal intensive care unit, displaying a strong heartbeat and normal breathing.

“The doctors informed us that there was nothing they could do to save his life, that the best course of action was to take him home and provide comfort,” Brandon recalled in 2015.

Jaxon’s parents had to learn how to use a feeding tube and navigate his seizures and periods of extreme irritability.

Despite his limited vision, Jaxon had fair hearing and frequently displayed heartwarming smiles. He found comfort at home, defying the doctors’ prediction that he wouldn’t reach his first year.

With therapy sessions and unwavering support, Jaxon made progress as he grew older. Though voluntary movements were challenging for him, by the age of 2, he could pucker his lips to give kisses.