Pregnancy can be an incredibly scary time in a woman’s life. While it’s often portrayed as a joyous occasion, there’s always the chance that an appointment will lead to bad news. For Brandon and Brittany Buell, they learned that their son, Jaxon Buell, wouldn’t live a full life after he was born. When it was discovered that he had brain and skull malformations, they didn’t expect him to even make it past a few days.

While knowing this, Brandon and Brittany chose to continue with the pregnancy. In January of 2014, Jaxon was born. When he arrived, he had only part of his skull. His brain was one-fifth the size of a standard newborn.

Jaxon was eventually d!agnosed with microhydranencephaly. It’s a very rare d!sease that affects the brain, causing profound developmental delay. Symptoms often vary from person to person. Jaxon’s parents knew that his time on earth would be short, but they got more time with their son than they initially imagined.

Jaxon’s parents made sure to let people know that his de*th had nothing to do with the health scare currently happening worldwide. They knew that Jaxon wouldn’t live a long life, but they just didn’t know when his time would be up. That means that they made every moment with their son count.

”Jax passed away very peacefully, comfortable in my arms,” his father said. “He was surrounded by his parents and his family and enjoyed so much love and snuggles in the final moments of his life and journey with us.” He also said that this “was something we always knew from the beginning would likely happen. We just didn’t know when.”

Jaxon’s long survival even shocked his doctor, who reportedly felt as if the young boy wouldn’t make it to his first birthday. “His doctor specifically tells us he’s writing his own book and we’re along for the ride,” mom Brittany said to First Coast News back in 2016. “He shocks us every day.”

Oddly enough, while Jaxon clearly had brain and skull defects, the news source also reports that it was around Jax’s first birthday that he’d get his official d!agnosis of microhydranencephaly. “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 noted. “But one by one they slowly started turning the machines off.”

Brandon said that having Jaxon in their lives made them a stronger family. “It’s changed us for the better and he has certainly made us stronger people. The petty things that used to make us mad, like rush hour traffic or stubbing your toe — it doesn’t phase us anymore because our priorities are so much richer and deeper now. He has changed our lives and I’m pretty sure a lot of special needs parents will say the same thing.”

While it’s sad that Jaxon has d!ed, it seemed like he had the best life he could. He was always surrounded by love and comfort, and he never seemed to suffer. Jaxon also helped others who might suffer from his condition. He brought awareness and also information about the defect during his short life. Our hearts go out to the Buell family for this tr*gic loss.