TAVARES, Florida — It’s a milestone Jaxon Buell wasn’t supposed to make.
But the baby, who was born without most of his brain, celebrated his first birthday at the end of August.
According to the Boston Globe, the Florida boy was born with a severe brain malformation that kills most infants within days or hours of birth. Many don’t even survive long enough to be born.
It wasn’t until they got home from the hospital after his birth that Jaxon’s parents, Brandon and Brittany Buell, learned their son had a condition called anencephaly.
“It means no brain outside of a brainstem,” Brandon told the Boston Globe.
While Jaxon has defied the odds and lived far longer than expected, his parents told the Boston Globe his medical complications have grown.
In the middle of last month, the parents took their son to the emergency room at Boston Children’s Hospital. It’s one of the top hospitals for pediatric neurology.
“Our plan was to go to the emergency room because they can’t turn you away,” Brittany told the Boston Globe. “We walked in and said ‘We’re here from Florida.’”
That’s when the family learned their son has microhydranencephaly. According to the Boston Globe, it means he has a brainstem, but his cerebellum did not form properly.
His most recent brain scan showed almost nothing.
After three weeks in Boston, the family returned to Florida. While they didn’t find the miracle they were looking for, their son did receive a new medication that is helping him sleep better.
The couple say people often ask if the pictures of their son are fake or Photoshopped.
“No, our baby is not Photoshopped,” they have replied again and again.
To read more of their story from the Boston Globe, click here.
To read more about Jaxon from Fox 35 in Orlando, click here.