A little boy born last year with microhydranencephaly, a rare condition that results in incomplete brain formation, just celebrated his first birthday leaving his doctors stunned and his parents ecstatic.

Today.com is reporting on the story of Jaxon Buell who was born to Brandon and Brittany Buell of Tavares, Florida on August 27, 2014. Suffering from a condition known as microhydranencephaly, which results in a partially formed brain and skull, he was not expected to live to birth, let alone to his first birthday.

“They told us he wouldn’t hear, see, or have any senses,” says his father Brandon, 35. “He wouldn’t tell us he was hungry. He may not do any of life’s normal luxuries. Early on it was very tough for us. It was tough not knowing what we were gonna get and we could lose him at any time.”

The dire news about Jaxon’s condition, coming during the early months of Brittany’s pregnancy, made the day of his birth one of great stress. Doctors originally named the condition Joubert’s syndrome which can sometimes leave a baby’s face very malformed. But when Jaxon made his entrance into the world, he had only a malformed head but his face was actually beautiful.

“It was startling, of course,” Brandon said about the first time he saw his son. “Then we brought him over to Brittany, and I prepared her real quick before she saw him. I said, ‘Just so you know, his head is small. . .”

But instead of it being a shock, “It was a moment to really realize, wow, he actually looks beautiful.”

The first three weeks of Jaxon’s life were spent in the neonatal intensive care unit where he was put on a feeding tube and subjected to a battery of tests to determine what his limitations would be. Born with only a fifth of a normal brain, with most of the cerebellum missing, doctors vacillated between one diagnosis and another, all of which were bleak and hopeless.

“We were an emotional wreck every single day, holding him. We would cry all the time. He was so amazing, so cute and so precious — our son — and we believed we were losing him any day,” Brandon told Today.

At one point, the Buells were asked to sign a Do Not Resuscitate (DNR) order for their son, a request they promptly refused. Regardless of his deformity, once he was born, there was no way the young couple was going to do anything but fight for his life.

Finally, the family was sent home and told to keep Jaxon comfortable until he passed away.

“It sounds crazy, but he didn’t need that much extra care,” Brandon said. “We had to learn to how use the feeding tube and deal with some seizure activity, but other than that, he was a normal baby in so many ways.”

Days passed into weeks into months and little Jaxon proved to be fighter. In fact, his parents nicknamed him “Jaxon Strong” because of his incredible will to live.

“They told us he wouldn’t be able to crawl or walk or talk. But we’ll put him on his left side and he’ll roll to his right side. He gets on his hands and knees for a minute. He’s already stronger than we ever thought,” says his mother, Brittany, 27.

But at 10 months, Jaxon began a period of extreme fussiness. He was inconsolable and screamed all day long.

“He was no longer a happy, snuggly, smiling baby. He was obviously in some type of discomfort that we could not solve.”

When their doctors in Orlando could only suggest giving him sedatives, the Buells decided to take matters into their own hands. They found the “very best of the best” specialists at Boston Children’s Hospital, boarded a plane and showed up in the emergency room. Within a week and a half, they got an appointment with a specialist who finally diagnosed Jaxon with microhydranencephaly.

Brandon said it is “100 percent accurate” because children suffering from this condition go through a period of extreme fussiness just before their first birthday. Once this passes, they settle down. Some have lived into their 30’s and are able to communicate with immediate family.

“It really put us at ease, especially after he started calming down,” Brandon said. “He was sleeping through the night again; he was happy, smiling at us; learning how to say mama and dada. He’s truly interacting and responding.”

In response to those who say the Buells should have aborted Jaxon, call them selfish for bringing a child into the world that has such serious limitations, and criticize their Facebook and GoFundMe page, Brandon wrote a long response on Facebook that is truly touching.

“No matter who you are or what you believe in, it’s clear that Jaxon’s tiny footprints will have a lasting impression on this world, and that he has already touched and inspired more lives in one year than most of us ever will in our lifetime. For his life, I am better, I am blessed, I am grateful, and I am quite simply, one proud ‘Addy’. I love you, son. Well done, big guy!”

The Buells say it’s important that people understand Jaxon is not on life-support or struggling in pain.

“He’s actually learning, thriving and getting a little better each and every day,” his father says. “It’s absolutely remarkable.”

Their GoFundMe page is solely to raise money to allow Brittany to stay at home with Jaxon and give him the care and attention he needs to continue to thrive.

Click here if you’d like to help this very special family!

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