A baby born with most of his skull missing defied the odds and celebrated his first birthday, despite not being expected to live.
Jaxon Buell was born in Tavares, Florida, one year ago. His parents were advised to abort the pregnancy after it was discovered that he had an extreme brain malformation. Doctors were skeptical that he would survive the pregnancy, but the baby’s parents never gave up hope.
“We went home that night thinking if you are telling us to abort, we would never know what Jaxon could have been, if he could have survived,” Jaxon’s father, Brandon Buell, said. “Who are we to decide? We were given a child, we are given a chance and we have to be his voice.”
Jaxon’s mother, Brittany Buell, said the idea of her baby not making it through birth was devastating and unfathomable.
“I was devastated,” she said. "It was heart breaking because something I always wanted my whole life was happening, but then I was told there was a possibility it might be a stillborn. It took all the joy away from me. The happiness that normal women have when they are pregnant — I had none of that."
Despite the odds, Jaxon was born on Aug. 27, 2014, weighing four pounds. His first three weeks were spent in the hospital, connected to tubes as brain surgeons attempted to understand his rare condition.
“It was very emotional," Brandon said of the time following his son’s birth. "I remember holding him on day two and listening to the doctors say my son would probably never walk, never talk, never know when he's hungry, or never hear or see. They really did not expect him to make it.”
The miracle baby was ultimately diagnosed with Microhydranencephaly, and his parents have gone above and beyond to ensure he has the happiest life possible. Still, they worry daily that their beloved boy might not make it.
“It is always in the back of my mind," Brittany said. "I'm very aware that today maybe [sic] his last day. I'm aware tomorrow he may not be here.”
“I try to stay positive 99 per cent [sic] of the time but there is that 1 per cent [sic] because I know the reality of the situation — that we're probably going to outlive him.”
To help offset the medical expenses, Brandon’s coworkers launched a GoFundMe page that has, so far, raised nearly $55,000 with the help of over 1,000 donors. Jaxon was even given the nickname “Jax Strong” by his supporters.
The parents said they “never dreamed” of the support they’ve received — calling it “incredible.”
“He thrives with his mom, that one-to-one stimulation that no other therapy can give," Brandon said. "If we can keep Brittany at home, giving him that 24/7 care is truly priceless and that's what his account allows us to do.
“It's all been so overwhelming in a positive way because we can't go anywhere without someone stopping us, and saying, 'Hey, what's your story?' or they would have seen his picture and say, 'Hey, look it's Jax Strong!' — his nickname! It's truly incredible the amount of people he has had an impact on.”