TAVARES, Fla. -- His case has intrigued the medical world and inspired countless others. Jaxon Buell's parents say doctors can no longer predict a prognosis for their one-year-old son.
He was born missing most of his brain, but the progress he has made since then has been remarkable.
Jaxon was diagnosed with microhydranencephaly. There's no known cause and no cure.
"We never thought he would make it through the pregnancy, let alone months and let alone making it to his first birthday, so for him to reach that milestone is a humongous deal," said Brittany Buell, Jaxon's mother.
When Brittany Buell was 17 weeks pregnant, she found out she was having the boy she had always wanted. That joy turned to shock the next day when she was told he had an extreme brain malformation for which there is no cure. She refused to terminate the pregnancy despite doctors telling her he likely wasn't going to make it full term.
"The first time I saw him I remember my husband bringing him around because I had had an emergency C-section, bringing him around to me. He warned me his head was small. It wasn't a great enough warning because I could have never expected it for it to be that small and for him to still be breathing and alive," recalled Brittany.
Jaxon was just 4 pounds and 15 inches. After a few weeks in the hospital, he was discharged.
"I think the doctors thought he would only make it a few weeks. They sent me home with hospice, and he was thriving in my eyes, so I cancelled hospice within two or three days of being home," said Brittany.
Jaxon has defied the odds and continues to surpass all expectations.
"The brain itself not being fully formed we really just don't know. The doctors don't even know. They've already told us he can't hear. He's not ever going to see or walk or talk or babble or anything. He can see because he reads books with us and watches Mickey Mouse I can see his eyes going back and forth and he focuses on things," said Brittany.
Jaxon turned one in August, and now weighs 12 pounds, about half the size of an average child that age.
His story has been shared around the globe, and his Facebook page, Jaxon Strong, has more than 270,000 likes.
Brittany opened up about what it's like her going through this journey.
"Rough. It's hard because I got the boy I always wanted, but we never know what tomorrow is. We take him everywhere. So we try to live like he is a normal child, and it's very hard because the entire year we've been back and forth to hospitals and doctor's appointments and sometimes doctors don't have answers for us, so we go home clueless."
Jaxon keeps hitting milestones and doing so many things she says doctors said he would never be able to do. Now, he's hit yet another milestone, turning 14 months old.
"Books can't write everything so when families go through this I tell them to have hope and prayer and I try to give them words of encouragement and I tell them our story because the doctors were 100 percent wrong."
A GoFundMe page has been set up to help with Jaxon's medical expenses not covered by insurance and to allow his mother to stay at home to care for him around the clock.
