Jaxon Buell, a 5-year-old boy from North Carolina who inspired thousands across the country to never give up hope, died April 1. Born with a birth defect called microhydranencephaly, which left him with half of his skull and a brain that was one-fifth the normal size, Jaxon was only expected to live for a few days. But the little guy defied the odds, and the life he led for his short time on Earth was a powerful reminder to never stop fighting.
Before Jaxon was born, Brandon and Brittany Buell faced the terrible prospect that there was something seriously wrong with their baby.
There were no concerns about Brittany's pregnancy until her 17-week scan, when their ultrasound technician got quiet as she got to where their baby's head was located, Today.com reports. A flurry of tests were ordered and the parents would later learn of their son's heartbreaking diagnosis.
According to News4JAX, some in their circle urged the parents to consider terminating their pregnancy, but the couple's faith preventing them from considering the procedure. Instead they chose to have a C-section to give him the best chance for life.
“We’re never going to play God," his father told the news station. "We always gave him a chance, a fighting chance."
Brittany ended up having her C-section at 37 weeks.
At the time, the Buells were based in Orlando, Florida, and they welcomed the birth of their son on August 27. Today.com reports that for the three weeks after his birth, Jaxon stayed in the neonatal intensive care unit, and although he had a strong heartbeat and was breathing well — his doctor's considered his case a lost cause.
“Doctors told us, ‘There’s really nothing we can do for him. Take him home and make him comfortable,’” Brandon told Today.com at the time. But even after the Buells took their son home, keeping their son alive was a task they happily took on.
“It sounds crazy, but he didn’t need that much extra care," he added.
As he grew, Jaxon wasn't able to walk or talk, but his family still felt that he was a "miracle."
The parents had to learn to use a feeding tube, deal with seizures, and periods of extreme fussiness — but it was all worth it to the couple. When they eventually brought Jaxon home, he was comfortable and happy. His vision was fuzzy, but his hearing was good and he liked to smile, his father recalled.
His progress continued to be slow, but meaningful. At 2 years old, Jaxon learned how to pucker his lips to give kisses and could finally reach for toys on his own.
The parents were warned not to expect Jaxon to make it past his first year. This upcoming August, he would have been turning 6.
The Buells decided to document their son's incredible life on a Facebook page called Jaxon Strong. It was there that Jaxon's story started to spread — reaching over 29,000 followers online who were touched by his life.
In March, Jaxon's health started to take a turn.
Jaxon's organs began to fail, News4JAX reports, and his family put him in hospice care to make him comfortable. Brandon pointed out to the news station that Jaxon's death was not coronavirus related.
“He passed away very naturally, extremely peacefully and comfortably. He had already entered hospice care and it had nothing to do with the pandemic,” his father added to First Coast News. “It’s crushing to say goodbye to your child. It’s never natural or fair to have to say goodbye to your child. They’re not supposed to go first, but we are so grateful for the time we were given with Jaxon.”
The dad said that it was a miracle to see his son to meet growth milestones.
Brandon recalled fondly how his son learned to call his wife "Mommy" and "he would call me ‘Addy.'"
“Those things were never supposed to happen," he continued. "We were not robbed of anything. We were given years no one thought would ever happen.”
Throughout all the ups and downs Jaxon was a "blessing" he added.
"Although my faith was tested during this journey, the peaks and the valleys, I’m so truly grateful that through faith we gave Jaxon the opportunity to be here," he said. "The strength he showed in responding to that and the years of beautiful memories created because we had that faith.”
“I have no idea how this healing process is supposed to go,” he added to News4JAX. “All I know is how proud of my son I am, how much I will miss him, how much he has changed my life, and how much he has touched countless others.”
And the news outlet reports that the dad penned a powerful message on Instagram to the son he lost.
“I love you so much, Jaxon," he wrote. "I can’t wait to see you again someday in your perfect form, running and laughing in Heaven. Enjoy the head start, son. You earned it by being the most perfect, the sweetest, and the strongest little boy ever.”
This year, instead of celebrating another year of Jaxon's life, his dad said the family will gather for a "Jaxon Day" to celebrate his memory, and the couple plans to help another family who needs help, First Coast News states.
It's all in keeping with the spirit of their sweet little guy who had a heart of gold. "I will never forget his beautiful bright blue eyes and his perfect smile along with all the precious memories we created together," he dad added in his online post. "His strength, sweetness, and incredible spirit will live on. Fly high and run far, son. You deserve it all so much!"
