Jaxon Buell The Boy Born Missing Most Of Brain And Skull Has Passed Away Aged 5

Apr 08, 2020

Jaxon Buell, the boy born with 80% of his brain missing due to a rare disorder called microhydranencephaly, has passed away aged 5.

His family announced this week that the boy died "peacefully and comfortably" on April 1, surrounded by his loved ones. 

When Brandon and Brittany Buell learned that the son they were expecting had brain and skill malformations, the couple decided they would give him a “fighting chance” at life anyway. 

“We’re never going to play God. We always gave him a chance, a fighting chance,” his father told News4Jax.

His doctors diagnosed him with microphydranencephaly, a rare disorder that hinders the brain’s development, causing little Jaxon to be born with just 80% of his brain. Although his parents knew his time with them would be short, they wanted to give him as much love and comfort as possible. Because of his strength and determination to live, the boy was nicknamed "Jaxon Strong."

Brandon Buell told the publication that Jaxon passed away on April 1 in hospice surrounded by his friends and family.

“Jax passed away very peacefully, comfortable in my arms,” he said. “He was surrounded by his parents and his family and enjoyed so much love and snuggles in the final moments of his life and journey with us.”

Jaxon’s life has been described as a ‘miracle’ on many occasions, as doctors did not expect him to live as long as he did.

“His doctor specifically tells us he’s writing his own book and we’re along for the ride,” his mother told First Coast News in 2016. “He shocks us every day.”

Writing for TODAY in 2015, Brandon said that doctors were “fascinated” by Jaxon’s rare condition, and that they were learning from him.

Brandon and Brittany first found out about Jaxon’s condition when Brittany was still pregnant at 17 weeks. 

“The ultrasound tech got quiet when she got to Jaxon’s head region — Brittany noticed it, I really didn’t,” Brandon revealed. “The very next morning, they called Brittany on her way to work and said there was concern with the baby. They believed at that time it was spina bifida. We were just rocked by that news.”

Against all odds, Jaxon was born on August 27, 2014. 

“Jaxon was born via C-section at 37 weeks,” Brandon wrote. “They were preparing us the entire time that he may not be born alive and if he was, he’d probably be hooked up to a lot of machines and couldn’t survive. The very first memory I have of Jaxon is I heard a real faint cry. It instantly choked me up. They brought him over and that was the very first time I got to see him.”

Our condolences go out to the Buell family.