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 Weeklyin 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. Seussis
a family favorite!) and has found ways to communicate. “We try to go on
a walk every day around the neighborhood after work,” the Christian
radio host 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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