Jaxon “Strong” Buell was born August 27, 2014, in Orlando, Florida to parents Brandon and Brittany Buell. He battles against microhydranencephaly, an extreme brain malformation that left him with 80 percent of his brain missing. Microhydranencephaly is a more complicated version of microcephaly, the birth defect linked to the Zika virus.
Because of this incurable condition, his parents were told that he would not make it to the two year mark, and urged to abort him. Yet baby Jaxon has passed the two year mark.
Jaxon’s daddy, Brandon, recently shared an update with TODAY documenting some of the recent success and setbacks with Jaxon’s progress. Brandon writes:
We celebrate Jaxon’s life every single day. We try to make it special for him. Whether reading a book in his room or cuddling on the couch together, it’s the littlest thing, but for him, it’s the world.
Jaxon’s situation is so uniquely different that there is no prognosis. No one knows what tomorrow will bring for him. We were told that he would not make it to 2-years-old and he passed it.
Doctors believe that Jaxon’s brain just stopped forming a few weeks into Brittany’s pregnancy. The parents were originally informed that Jaxon would probably never hear, see, or talk, because the components of the brain that make those things possible are not there. Yet Jaxon is doing all those things. Brandon described some of the details:
He can see and hear. We’ve noticed that he can smell. He can taste — because although he’s still dependent on a feeding tube, we let him try different foods. We’ll put jelly or ice cream on our fingers and place it in his mouth. There are certain foods where he scrunches his face and spits it out, and other times when he starts smiling. His senses are working and it’s really amazing to watch that.
He loves ice cream — he probably gets that from me. He likes mashed-up baby food like avocado, carrots, squash. He seemed to really hate banana, though.
Jaxon has seizures every day but other than that he is very happy and comfortable. His parents do their best to make each day special for Jaxon, especially now since every passing day is one more day than doctors said he would live. Jaxon smiles all the time and is able to do more now than he used to be able to do. He has a bit more mobility and has more facial expressions.
Brandon and Brittany agree that baby Jaxon has made their family stronger, and have written about their experiences in a book entitled, Don’t Blink. The title of the book alludes to the Kenny Chesney song “Don’t Blink.” Jaxon’s parents focus on this every day and try not to miss a single moment with Jaxon because every day is a precious gift. Brandon summed up the latest update with:
His life is precious. We don’t know what tomorrow will bring, but he’s still here and we celebrate that. Whatever Jaxon needs that day, we will do.