Baby Jaxon Buell, who doctors said would not live for more than a few weeks because parts of his skull and brain are missing, celebrated his first birthday in August.
Jaxon, whose is known on social media as Jaxon Strong, was born with a serious birth defect called Microhydranencephaly, where the brain and skull don’t form properly.
In America, nearly one in 4859 babies are born with Microhydranencephaly, however most die before they are born or shortly after.
Jaxon’s parents Brittany and Brandon Buell said when they learned of their unborn son’s condition, they were devastated.
Brandon said, “After our second ultrasound at 17 weeks, when we found out he was a boy, we knew something was up when the ultrasound technician went towards his head and went very quiet.”
“Brittany got the call the next day from the doctors saying there was a concern with the MRI results. She was in tears and told me there was an issue with the baby. Of course, I lost it at work so they sent me home and the rest of the day was a blur truly.”
Brittany Buell also said she was devastated at the thought her son wouldn’t live.
“It took all the joy away from me. The happiness that normal women have when they are pregnant, I had none of that,” she said.
“We went home that night thinking if you are telling us to abort, we would never know what Jaxon could have been, if he could have survived,” Buell said.
Baby Jaxon survived the pregnancy and was born on August 27, 2014.
Weighing just 1.8 kg, he spent several weeks in hospital as brain surgeons tried to understand his rare condition.
“It was very emotional. I remember holding him on day two and listening to the doctors say my son would probably never walk, never talk, never know when he’s hungry, or never hear or see. They really did not expect him to make it,” his father said.
Jaxon's short life has attracted global attention.
Jackson's Facebook page has over 200,000 "likes," and he has received nearly $100,000 in donations on a GoFundMe page, which will go directly towards the family's monthly expenses including the baby’s medical bills.
"He's going to always to be very small. At this point he's 13 months old and he weighs just over 12 pounds. He's certainly not suffering whatsoever, he's actually still thriving," his father said.
Baby Jaxon is not able to eat on his own and depends on a feeding tube for nutrition. However, his father says he is most like normal children in many respects and is "virtually perfect."