'Miracle' Boy Born With 80 Per Cent Of Brain Missing Has Died
A young boy, whose determination to live with an extreme brain malformation captured the world, has died at the age of five.
Jaxon Buell died peacefully and comfortably on April 1, his father Brandon told local American news outlet News4Jax.
“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," Brandon said.
Jaxon was born in 2014 with an extremely rare birth defect called microhydranencephaly, meaning he only had part of his skull and his brain was about one-fifth of normal size.
The outlook for children with hydranencephaly is generally poor, and many children with the disorder die before the age of one, according to the National Institute of Neurological Disorders and Stroke.
However, in rare cases, children with the condition may survive for several years or more.
Due to the condition, Jaxon could not walk or talk.
His parents began sharing his progress on social media, attracting support and help with medical bills from across the world.
"He's our miracle baby. He's our hero. He's definitely our little hero," his mother said in 2015.
Brandon told the U.S. TODAY program his son recently entered hospice care after showing signs of organ failure.
"Ultimately, Jaxon passed away from his body and organs shutting down, as is common with children like him," he said.
"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."
He said his son's legacy is one of strength and an "amazing sweet spirit".
"He truly made me, his mum, his family, and all who learned of his story better," he said.