When Jaxon Buell celebrated his first birthday on August 27, parents Brandon and Brittany Buell were quite emotional about the milestone event for their little boy.
Jaxon was born without most of his skull due to a type of anencephaly, which is a neurological condition that affects approximately one in 4,859 babies born in the United States each year, according to the Centers for Disease Control and Prevention. The CDC notes that “almost all babies born with anencephaly will die shortly after birth,” and the Buells told The Daily Mail that doctors didn’t expect Jaxon to survive the pregnancy.
After an ultrasound at 17 weeks, doctors informed the Buells that there was a neurological abnormality with their unborn child, though they weren't sure what exactly it was. The Buells were given the option to terminate the pregnancy at 23 weeks, but they opted not to.
Jaxon spent the first three weeks of his life in the neonatal intensive-care unit at Winnie Palmer Hospital in Orlando, Florida, but it wasn't until he was nearly a year old that doctors at the Children's Hospital in Boston, Massachusetts
diagnosed him more specifically with microhydranencephaly, reports Boston.com. This diagnosis helped doctors find the best possible medications for Jaxon, who had been struggling to sleep through the night and having episodes that resembled seizures.
Shortly after the diagnosis, the family wrote on Jaxon's Facebook bio, “Jaxon has already shown how strong, smart, and special he is, accomplishing feats that doctors doubted he'd ever be able to do, shows improvements each and every day, and just reached a miraculous milestone in celebrating his 1st birthday.
His perseverance and strength already shown is why we are calling his inspirational story, ‘Jaxon Strong.'”
Though Jaxon is stable, Brittney knows her young son's health could change overnight. “It is always in the back of my mind,” she tells The Daily Mail. “
I'm very aware that today maybe his last day. I'm aware tomorrow he may not be here. I try to stay positive 99 per cent of the time but there is that 1 per cent because I know the reality of the situation – that we're probably going to outlive him.”
Jaxon's
Facebook page currently has over 131,000 likes, and his parents have also set up a
GoFundMe page, which has over $72,000 in donations thus far.
