At 14 months, Jaxon Buell has surpassed everyone’s expectations by not only surviving, but also thriving with his disability. Jaxon was born with Microhydranencephaly, an extremely rare form of brain malformation causing fluid to form inside his skull. As a result, Jaxon’s brain is one-fifth the size of a typical brain and his head is smaller than the norm. Doctors have yet to find a similar case matching Jaxon’s diagnosis and were worried that he wouldn’t make it full term. But since day one, Jaxon has been beating the odds.
While Brittany Buell was pregnant, doctors were never able to see Jaxon’s full head or face on the ultra sound. They warned the Buell family that he was weeks behind in growth, especially in his head, and they were doubtful that he would survive. However, this thought didn’t hinder Brittany and Brandon who held on to the hope that he would survive. Jaxon was born four pounds and 15 inches. His small stature and head shocked Brittany and Brandon at first, but once the shock wore off they were overwhelmed with joy that their baby was still alive and breathing. They vowed to enjoy every moment with their miracle.
Courtesy: Brandon Buell
Since the day he was born, Jaxon has shown incredible determination and fight, granting him the well-deserved nickname “Jaxon Strong.”Although modern medicine and the Buell families’ faith play an important role in Jaxon’s progress, the special bond Jaxon has with Brittany is the main factor that has helped his come this far. With the countless donations Jaxon’s cause has received on their GoFundMe page, Brittany has been able to stay home from work and dedicate all her time to Jaxon. The relationship Jaxon has with his family has made a world of difference in his prognosis.
“Jaxon looks into her eyes and says I love you as often as he can,” said Brandon. “You can tell he is thriving and working so hard to do that because of the simulation his mom gives him and that love he feels. He loves time with his daddy, but I have to admit that bond with mother and son is the most important aspect in life.”
For the Buell family, they are never sure exactly what each day will bring. Like many babies his age, Jaxon has been talking up a storm and is working on saying I love you all the time. Although, as many times as he will be excited and try to talk, he may go into a seizure at any time due to the Microhydranencephaly. Jaxon eats through a feeding tube between 9 a.m. to 7 p.m. and 9 p.m. to 7 a.m. every day and is frequently cranky and tired, but in many ways Jaxon is still a “normal” baby.
Every night Jaxon has story time and will actually follow along and get into the latest tale he is being told. He also is a huge fan of music. At just a few weeks old, Jaxon was jamming out to Bob Marley’s hits. Whenever he would cry, Brandon Buell would sing “No Jaxon No Cry” in the tune of “No Woman No Cry,” and Jaxon would immediately calm down and recognize the song. “He is blowing our minds every day by showing more and more improvement,” said Brandon.
Despite his disability, Jaxon’s parents strive to give him the most normal life as possible, taking him to places such as restaurants and football games. Hailing form Tavares, Florida, the Buell family grew up die-hard Seminole fans. Brandon frequently watches football games with Jaxon and is training him to be a future Nole. “I love the Seminole nation and the unconquered message,” said Brandon. “You don’t get a chief Osceola running out into the field with every team. It’s a great connection.”
Jaxon loves going to games and meeting new people. However his unique appearance is constantly noticed and it is difficult to ignore the relentless stares and whispered discussions about his disability. His family makes it a point to assure people that although he may be limited in certain ways, Jaxon’s outreach and inspiration is not.
“Don’t just stare at someone that is different, but smile. Understand there is a real story there,” said Brandon. “Every person no matter the disability has a story and they can offer something that the average person can’t. Whether they can run at the same pace or not doesn’t really matter, because they have such a beneficial purpose in life.”
Lately, Jaxon is being recognized in public as his story has reached such an enormous following. Back in August, before the Buell family went to Boston for the breakthrough on their son’s diagnosis, Jackson’s Facebook page had 12,000 likes. Today, it is approaching 300,000 likes and the story has gained global media attention. In his short year on this planet, Jaxon has had such an incredible outreach and he has been a huge inspiration for thousands of people.
“This journey has changed us forever. He has made us better and stronger people,” said Brandon. “We no longer worry about the mundane things in life like when Florida State lost to Georgia Tech. It drove me insane, but instead of being mad for three days, I was mad for three minutes. I was holding Jaxon at the very end of the game and looked down at my son who was so peaceful and knew everything was going to be okay.”
Day in and day out, Jaxon is putting the able back into disabled. The doctors never predicted he would come so far, however he is at 14 months walking, talking and inspiring the world. Each day with Jaxon is truly a gift. His story has proved that whatever challenges life may throw at you, they don’t have to stop you from living. Live for today in the hope of what tomorrow may bring – Jaxon sure has.