Jaxon Buell, the boy who was nicknamed “Jaxon Strong” for his determination to live after he was born with an extreme brain malfor-mation, has d!ed. He was 5.
The child passed away “very peacefully and comfortably” on April 1 in North Carolina, his parents said.
His story and striking photos — showing what his family described as “bright blue eyes, awesome hair and amazing smile” — made worldwide headlines, and TODAY featured the family’s account of what it was like to care for Jaxon in 2015 and 2016.
“He passed away in my arms and surrounded by his parents and family who were loving on him and providing comfort and endless hours of snuggles throughout his final days,” Brandon Buell, 35, his father, told TODAY in an email.
“Ultimately, Jaxon passed away from his body and organs shutting down, as is common with children like him. This had absolutely nothing to do with the COVID-19 virus, but was something we always knew from the beginning would likely happen. We just didn’t know when.”
Jaxon recently entered into hospice care at home after showing signs of slowing down in the past year or so, and the family was preparing to say goodbye, his dad added.
“Jaxon’s legacy is about his strength and his amazing sweet spirit. He truly made me, his mom, his family, and all who learned of his story better,” he said.
Jaxon was born on Aug. 27, 2014, in Orlando, Florida, with microhydranencephaly, a developmental abnormality that affects the brain. It left him with 80 percent of his brain missing, with the cerebellum — the region that controls movement, coordination and balance — most affected. Doctors believed his brain stopped forming a few weeks after he was conceived, Brandon Buell said.
There were no concerns about the pregnancy until the second ultrasound at week 17, when the ultrasound tech became quiet as she got to Jaxon’s head region, his father recalled. A flurry of tests and potential diagnoses followed.
Doctors weren’t sure he’d be born alive, but Jaxon let out a faint cry when has was delivered via C-section at 37 weeks. The baby boy was very undersized and his head was not fully developed, but he was beautiful, his father said.
Jaxon stayed in the neonatal intensive care unit for three and a half weeks. He had a strong heartbeat and was breathing well.
“Doctors told us, ‘There’s really nothing we can do for him. Take him home and make him comfortable,’” Brandon Buell said in 2015.
“It sounds crazy, but he didn’t need that much extra care.”
The family had to learn to how use a feeding tube, and deal with seizures and periods of extreme fussiness. Still, Jaxon was happy and comfortable — not on life support or struggling, his father said. The child’s vision was fuzzy, but his hearing was good and he liked to smile, he noted.
The family was told Jaxon would not make it to his first birthday, but he passed that milestone and beyond.
As the boy got older, he progressed in small but significant ways when it came to interacting with his toys and in therapy, his dad said. He originally did not have voluntary movements, but after turning 2, the family said it was overjoyed that Jaxon would pucker his lips to give kisses, and reach for his parents or his toys.
Still, his unique challenges meant no one knew what the next day would bring for him, his dad told TODAY in 2016.
“There’s a miracle behind Jaxon’s story. We want to let other families know that even when there’s a dark situation, every life should be celebrated, valued and cherished,” Brandon Buell said.