But he has persevered, with his family releasing new Christmas-themed photos of Jaxon.
“I’m happy to report that what we’re witnessing is one of the best moments that Jaxon has had, and we’re just hoping and praying that that continues,” Brandon Buell, his father said.
“We’re just so relieved and happy to watch our son growing before our eyes.”
Some of the new images show Jaxon visiting Santa at a mall in Orlando, Florida.
Others feature Jaxon in front of a brightly decorated Christmas tree at the family’s home in Tavares, Florida, along with a big card from his parents that expresses thanks for the support they’ve received from around the globe.
“He really has a footprint across the world now, which is just incredibly humbling for us,” Buell said.
The little boy is communicating more effectively, has great eye contact and head control, and is more mobile, his father noted. He says “mama,” “dada” and sometimes exclaims “hey, hey” when he wants to be picked up. He smiles, follows things that interest him with his eyes and grabs his toys.
Jaxon receives nutrition through a feeding tube, but the family sometimes gives him a small morsel of food to taste and he loves the flavor, his dad said. He receives occupational and physical therapy.
His case is so rare that doctors have stopped giving the family a prognosis, Buell noted.
“They’re just fascinated — they keep using that word — fascinated by Jaxon. He’s writing his own story, he is his own person, so they can’t tell us what’s around the corner,” he said.
“We’re prepared that any day could be his last because of what he faces, but he really is not showing signs of being weaker. He’s actually doing the opposite, he’s showing improvements.”
The family has nicknamed the baby “Jaxon Strong” for his determination to live and thrive.
Brittany Buell stays at home to care for Jaxon, which the Buells can afford thanks in part to a GoFundMe page that was set up for the family. The money helps pay for bills and expenses, and some of it is donated to nonprofit organizations for medical research and to benefit other families who may have to deal with a similar situation, Buell said.
The focus now is to be able to keep Brittany at home.
“She is the glue for our family. She has such a love and a patience for Jaxon and they have this interaction that is just priceless,” Buell said.
Jaxon may ultimately live a shorter life, but he will impact and inspire many lives, his dad wrote in a message on Facebook.
