Jaxon Buell is now something his doctors never thought he would be: one year old. Born with microhydranencephaly — a rare condition that results in an underdeveloped skull and brain — Jaxon was not expected to live more than a few days after he was born, if he made it out of pregnancy at all.
Updates on this amazing boy's life come via his parents on a Facebook page, Jaxon Strong. The page has amassed more than 126,000 followers who unite to celebrate this adorable 13-month-old who is giving us all a lesson in what it means to be a true fighter.
Of course, there are some who stare at Jaxon for reasons other than getting lost in his gorgeous blue eyes. They offer the family unsolicited opinions and, according a Facebook post by Jaxon's father, even condemn them for not having an abortion and choosing to raise their son the way he is.
While these rude individuals are spewing their wanton commentary, Jaxon's parents are busy doing something else: cherishing their son the way any normal parent would. In fact, in the same Facebook post, Jaxon's father Brandon describes what is normal for their family:
He is talking up a storm these days, truly teaching himself how to communicate with us in his own way, in his own language, and we actually understand it after learning with him for these 13 months. He says "Mama", and he says "Ah Ah" (Dadda), and "Addy" (Daddy). I love that. Jaxon is simply that, Jaxon. He is so normal in so many ways. He is a baby who is dealing with teething, he cries when he's hungry, he hurts from gas pains, he throws ups, he cries, he poops, he sleeps, he repeats. For our family, it's also normal to feed our baby by feeding tube. It's normal to embrace him as he goes through his startle seizures multiple times a day. It's normal to look at Jaxon and see a perfectly created boy and other babies truly do look weird and oversized to us. And, it's normal to take Jaxon in public and always feel the looks, the stares, and the glances, usually from people that don't even realize that they're doing it.
While this might be their normal, it has not been easy.
According to an interview with the Buells for Boston.com, the emotional roller coaster began 17 weeks into Brittany Buell's pregnancy. An ultrasound revealed that Jaxon was not growing normally, but there were no clear answers of what was happening. After his birth, Jaxon was sent home on hospice care, as he wasn't expected to live more than a few days. They canceled the service after a week.
Though there have been scary times when it looked like Jaxon would not hold on, he is proving to be an inspiration. There is no cure for Jaxon's condition, but his family is rightfully celebrating every milestone and living life as normally as possible.
Check out Brandon Buell's powerful retrospective of Jaxon's first 13 months of life:
Understandably, the Buell family faces a great deal of medical fees in taking care of Jaxon. Brittany Buell cares for her son full time and is not able to work outside the home.
Please consider donating to Jaxon's GoFundMe page to show support for this inspiring child and his amazing parents.