JACKSONVILLE, Fla.—Doctors call him a miracle. This Florida boy who captured the hearts of thousands around the world is turning two!
Doctors told the Buells early on in their pregnancy there would be problems.
It wasn’t until Jaxon turned one that he was finally diagnosed with a rare, incurable, and often deadly brain malformation called Microhydranencephaly.
They get the question all the time if his case is linked to Zika. Doctors have said that it is definitely not Zika-related, but Jaxon does have a similar condition.
Today he is thriving, but Jaxon’s story was given an ending before it even began.
“They expected him to pass away,” said Jaxon’s father, Brandon. “In fact, they told us to simply take him home because they expected him to pass away.”
Doctors predicted he wouldn’t live to see his first birthday, let alone reach other milestones. They said he probably wouldn't ever walk, talk, see or hear.
But his parents, Brittany and Brandon, said their son refused to go by the book from the beginning.
"The first month of his life they had him hooked up to every single machine and cord you could think of because they thought he was going to need all these things," Brandon said. "But one by one they slowly started turning the machines off."
“His doctor specifically tells us he's writing his own book and we're along for the ride,” said Brittany. “Literally those are his words.”
Neurologist Dr. Carl Barr says Jaxon is the only child he's ever treated with this condition.
“Initially we thought he was just going to be brain stem functions,” said Barr.
Not only can Jaxon see and hear, but he can now suck a pacifier, smile and is starting to learn to talk.
“He shocks us every day,” said Brittany. “Mommies and daddy’s and hey. Those are his three favorite words.”
Just 12 pounds, about the size of a 6-month-old, Jaxon is now learning how to crawl with a little help. While he is still dependent for now on a feeding tube, he's learning how to eat.
“We believed for a while what the doctors told us would happen and we were ready to try and be prepared to lose our son,” said Brandon. “Now we believe the sky is limit for him.”
His progress is tracked by hundreds of thousands around the globe through the Jaxon Strong Facebook page, and the family’s foundation, which was launched this spring to raise awareness and money for neurological research and support others living with disabilities.
Jaxon will continue to face challenges, but his story is far from over.
Jaxon Strong wristbands are now available in all 50 states, more than 70 countries, and on all seven continents.
Some of his biggest fans are right here in Jacksonville. The Jaguars reached out to the Buells last year after hearing about Jaxon and they’ve gotten to come meet the coach and players and he even has his own Blake Bortles jersey.
The Buells have written a book about Jaxon called “Don’t Blink - What the Little Boy Nobody Expected to Live Is Teaching the World about Life.” It will be in available in September of 2016.