When the parents of 13-month-old Jaxon Buell were told their son had a severe birth defect and may not survive past birth, they didn’t know what to expect.
“They didn’t give us a definitive term for what Jaxon had in the hospital,” Brandon Buell, Jaxon’s father, told Boston.com. “We didn’t see the world until we got home and looked at discharge papers and saw anencephaly. It means no brain outside of a brainstem.”
But Jaxon thrived, and Brandon’s wife, Brittany Buell, canceled the hospice that had been sent home with them a week later. While the birth defect caused Jaxon’s head to develop abnormally small and he has a severe brain malformation, the rest of his body developed normally.
Jaxon cries for his parents, reaches out to them, sits on his own, and has bowel movements. Despite those milestones, he copes with gastrointestinal issues, is fed by a feeding tube and suffers from episodes described as similar to seizures, but he has not been formally diagnosed with epilepsy, Boston.com reported.
Recently the Buells traveled to Boston Children’s Hospital in hopes of receiving a more formal diagnosis for their son, the news site reported.
“Our plan was to go to the emergency room because they can’t turn you away,” Brittany told Boston.com. “We walked in and said, ‘We’re here from Florida.’”
After running tests, doctors determined Jaxon’s diagnosis to be microhydranencephaly— meaning he has a brainstem, but it is thinner than it should be, and his cerebellum did not form properly.
A neurologist who is not treating Jaxon told Boston.com that this diagnosis in children is neurologically devastating. There is no known cure for Jaxon and no treatment available.
Jaxon has taken at least a dozen drugs and 11 different types of formula throughout his short life, Boston.com reported. Following his stay at Boston Children’s Hospital, he began taking a new medicine that is helping him to sleep through the night.
“It’s really helpful to finally have a diagnosis that makes sense,” Brandon told Boston.com. “We would not have that if we hadn’t come to Boston. We came to Boston hoping to find a way to add something to the quality and comfort of his life.”
Photos and videos that document Jaxon’s journey can be found on Brandon’s Facebook page, where his parents are using the hashtag #JaxonStrong to help spread awareness of their son’s plight. The family is also raising funds to help cover medical costs and prevent Brittany from having to return to work so that she can continue tending to her ailing son.
“We continue to ask for support and prayers, as it is a blessing that his mom continues to stay home with him for constant care, nurturing and development,” the page reads.