When Brandon and Brittany Buell welcomed their son, Jaxon, on August 27, 2014, doctors warned that he wouldn’t live longer than two months. “They said, ‘give him comfort, he won’t be here too long,'” Brandon tells Us Weekly in a new interview. But baby Jaxon had a different plan. Today, the 2-year-old, who was born microhydranencephaly, a rare genetic disease that left him with 80 percent of his brain missing, continues to beat the odds.
“Jaxon is achieving things medical professionals doubted he would ever do,” says the Florida-based dad. Indeed, the Buells were told their child would probably never hear, see, smell or taste. And yet the toddler — whose nickname is “Jaxon Strong” — can do all three things. Though Jaxon is dependent on a feeding tube, “we will try tiny amounts of food that we’ll just put on the tip of our finger,” explains Brandon, 31. “If he likes it, he’ll start smiling or he’ll open his mouth really wide as if he’s asking for more.” Like his mama, Jaxon loves chocolate ice cream and avocados, his proud father says.
According to Brandon, Jaxon recognizes his name, responds to books (Dr. Seuss is a family favorite!) and has found ways to communicate. “We try to go on a walk every day around the neighborhood after work,” Brandon tells Us. “Jaxon rides in a wheelchair-stroller combo and when we hit bumps, it makes him laugh. He turns toward the breeze and closes his eyes and really soaks it all up. He comes alive in those moments.”
And while there are struggles —Jaxon suffers from regular seizures and acid reflux which causes him to throw up multiple times a day— Brandon says his boy remains “happy, bubbly and wanting.”
“After he goes through a seizure and calms down … he’ll reach up to mommy’s face and grab the side of her cheek and kiss her nose and mouth,” marvels Brandon. “It’s tough to watch him struggle, and you feel like it’s so unfair, but then when he bounces back you realize he’s happy and comfortable.”
Last August Jaxon celebrated his 2nd birthday with a much-deserved backyard pool party. “Jaxon was splashing around. He wore himself out being so excited,” Brandon recalls. “And it wasn’t just the blowup slide! He loves people and where are a lot of voices, a lot of people, he starts to really show off and try to stand up.”
Brandon and Brittany, 28, have penned Don’t Blink, a book about their experiences with Jaxon, and started the Jaxon Strong Foundation to raise awareness and funds for neurological research. “We believe every life has value and purpose,” Brandon tells Us, “and we show Jaxon that every single day.”
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