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'Miracle baby' born with disorder defies odds

Posted: 7:16 PM, Sep 29, 2015
Updated: 2015-09-29 23:16:52Z
Happy (belated) Birthday Jaxon Buell!
 
His doctors said he would never speak, never be able to see or hear and would never survive past a few months.
 
But miracle baby Jaxon has proved them all wrong, celebrating 13 months on Sunday.
 
His mother, Brittany Buell, told Orlando's WOFL-TV , "The told us two weeks, two months, two years. Now, they are finally telling us 'we don't know.'"
 
“They didn’t give us a definitive term for what Jaxon had in the hospital,” his father Brandon told Boston.com . “We didn’t see the word ‘till we got home and looked at discharge papers and saw anencephaly. It means no brain outside of a brainstem.”
 
Anencephaly is a neural tube birth defect in which a child is born without parts of the brain and skull. According to the Centers for Disease Control, about one in 4,859 babies in the U.S. will be born with anencephaly each year.
 
Doctors at Boston Children's Hospital gave Jaxon a slightly modified diagnosis: microhydranencephaly.
 
That means that he does have a brainstem, though it is thinner than it should be. His cerebellum did not form properly and his cerebral cortex is almost nonexistent.
 
The Buell family chronicles their journey on Facebook , posting videos, photos and updates on Jaxon.
 
They also have received donations through a GoFundMe page to help with their tremendous medical expenses.