Rare Diseases

Boy born with partial skull meets Santa, celebrates other childhood milestones

  • jaxon santa

     (Photo courtesy Facebook/Brandon Buell)

  • jaxon family

     (Photo courtesy Facebook/We Are Jaxon Strong)

More than a year after doctors predicted their son would never see, hear, walk, talk or emote due to a rare condition marked by a partially formed skull, Brandon and Brittany Buell are celebrating most of the milestones typically witnessed by parents of a 1-year-old. The Orlando-area couple ticked off one of those milestones— taking their son, Jaxon, to meet Santa Claus— earlier this month.

“We’re getting close to that one-and-a-half-year mark, and he’s (Jaxon) had the best stretch of health we’ve ever seen him be in,” Brandon Buell, 30, told FoxNews.com.

Jaxon Buell, who had his first birthday on Aug. 27, 2015, was diagnosed at birth with microhydranencephaly, a developmental abnormality  marked by incomplete brain and skull formation. According to the National Institutes of Health (NIH), scientists don’t know what causes the condition nor have they found a cure.

Since one of Brandon’s colleagues started a GoFundMe page to cover 27-year-old Brittany’s salary at a local magazine so she could instead stay home with Jaxon, the Buells’ story hasn’t ceased in going viral.

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To meet Santa on Dec. 6 at the Mall at Millenia in Orlando, a film crew from a Germany-based network accompanied the Buells. On Wednesday, Brittany posted photos of the little boy’s meeting with the man in the red suit on Facebook, and the album post has racked up nearly 50,000 likes so far.

“[Jaxon] was a little sleepy when he met Santa, but that Santa was the best we’d ever seen— he knew exactly how to sit and hold Jaxon,” Brandon said. “They had a conversation and we were not privy to know what they talked about, but it was a very touching moment.”

Brandon added that as the boy and St. Nick met, passersby stopped to get a closer look at their meeting, and even Santa himself seemed to get a bit choked up.

The Buells regularly update supporters on their Facebook page, Jaxon Strong, and they have since donated “thousands of dollars” to nonprofits that help children like Jaxon after their GoFundMe page reached its $35,000 goal when Jaxon was 6 months old, Brandon said.

When supporters make a $5 donation to the cause, the Buells send them a wristband that reads “Jaxon Strong.” Today, those bands grace the wrists of people on six of seven of the world’s continents, Brandon said.

“We keep waiting for it to kind of disappear and Jaxon be a 'flavor of the week'— but [the media attention] is not going away,” Brandon said. “It is surreal, it’s humbling, overwhelming and odd to be about our family and our son, but he certainly deserves it.”

Brandon recalled that doctors told him and Brittany early on that Jaxon likely wouldn’t be more than “a vegetable,” reliant on machines to keep him alive, and unable to communicate or say when he is hungry. However, at 15 and a half months old, Jaxon smiles, giggles, and says “mama,” “dada,” and “I love you” regularly.

Jaxon attends physical therapy and must still rely on a feeding pump, but from day one, the Buells have remained hopeful he’ll continue to defy the odds.

This Christmas, the Buells plan to stay local and peruse Christmas light displays in downtown Mount Dora, Fla., where Brandon works as an executive assistant at a community bank, have a traditional Christmas Day feast, listen to music, and spend time with family.

“We try to take every day one day at a time,” Brandon said. “Even though he’s doing extremely well— and we’re hoping and praying it continues— we don’t know what’s around the corner for him. He has a severe disability he’s up against, but it doesn’t define him.”