In a remarkable tale of human survival, a baby born with out large parts of his skull and brain is celebrating his first birthday today. Jaxon Buell of Florida was not expected to live more than a few days after he was born.
Jaxon suffers from a rare birth defect called anencephaly. The malformed head occurs when the nervous system develops incorrectly in the early stages of the pregnancy. Jaxon’s parents, Brittany and Brandon Buell, were told of Jaxon’s deformity while Brittany was still pregnant. Despite few babies surviving this condition, the Buells decide to have Jaxon.
“Every doctor we’ve talked to is fascinated that Jaxon is here today, and they can no longer predict a prognosis,” said Brandon Buell. “We know the reality behind this better than anyone else, what Jaxon is up against, and that his life is already miraculous at this point.”
Indeed, despite his handicap, Jaxon is marking many of the milestones ordinary infants celebrate.
“He is talking up a storm these days, truly teaching himself how to communicate with us in his own way … He is so normal in so many ways. He is a baby who is dealing with teething, he cries when he’s hungry, he hurts from gas pains, he throws ups, he cries, he poops, he sleeps, he repeats.”
Unfortunately, all is not going completely well for young Jaxon. For the past few months, he has been suffering from seizures and feeding complications. Worried, his parents flew north to Boston’s Children’s Hospital- one of the best facilities in the world.
The Boston doctors were able to give Jaxon a specific diagnosis for his woes: microhydranencephaly.
“It’s really helpful to finally have a diagnosis that makes sense,” said Brandon. “We came to Boston hoping to find a way to add something to the quality and comfort of his life.”
In the United States, about one in 4859 children are born with anencephaly. Microhydranencephaly is a far more serious and rare condition. Microhydranencephaly combines the small head and malformed brain of anencephaly with the absence of brain hemispheres, in their stead are fluid-filled sacks. The most complex areas of the brain, those responsible for thought and communication, are missing.
There is no cure for either condition.
Nonetheless, the Buells have not lost hope. They hope Jaxon will be one of the few who makes it to adulthood. The family has received a great amount of support from across the world.
Across social media, the Buells have shared photos and videos of Jaxon. The media show that Jaxon acting in the same way as any other baby- sitting up, reaching for things. He even knows his parents by name. Brittany is ‘mama’ and Brandon is ‘ah ah’ (dada) or ‘addy’ (daddy).
Their GoFundMe page has already raised $70,000 to assist with Jaxon’s treatment and care.
“Jaxon’s tiny footprints will have a lasting impression on this world, and that he has already touched and inspired more lives in one year than most of us ever will in our lifetime,” said Brandon. “For his life, I am better, I am blessed, I am grateful, and I am quite simply, one proud ‘Addy.'”
Jaxon has over 100,000 followers on Facebook and Twitter. His hashtag is #JaxonStrong.