Jaxon Buell was born without a large part of his skull and brain. Doctors told Brandon and Brittany Buell their son wouldn’t live past a few weeks. In August, the family celebrated his first birthday.
After many months of tests and misdiagnoses, doctors finally diagnosed Jaxon with microhydranencephaly, a severe brain malformation for which there is no known cure.
Jaxon’s short life has not been without struggle, and his parents’ candid accounts on social media have garnered global attention.
In a September Facebook post, Brandon Buell explained the couple’s decision to continue the pregnancy after learning at a 17-week untrasound their son had something wrong.
“When we first learned there were concerns for Jax during the pregnancy, we were given the options of carrying him to term or having an abortion because there was the unknown issue. No doctor could tell us exactly what was wrong or what to expect, but we did make sure to ask if Jaxon was in pain or was suffering, and we asked if there were any added risks for Brittany during the pregnancy or potentially at time of delivery. Since the answer to both questions was “no,” we never came close to considering abortion. Yes, we are Christians, and our faith has certainly been vital during this entire journey for our family, but we’re still realists. Had there been any suffering in the womb or a danger involved other than Jaxon possibly not being able to live outside the womb because of the concern for his head and brain, then we certainly would have had a different discussion. However, that wasn’t the case, and it was our choice, and only our choice.”
A Facebook page, Jaxon Strong, has over 200,000 “likes,” and a GoFundMe page has received nearly $100,000 in donations, which go toward the family’s monthly expenses, including Jaxon’s medical bills.
Jaxon cannot eat on his own and relies on a feeding tube for nutrition but his dad tells CNN it’s one of the only difference between him and most other children.
“He’s going always to be very small. At this point he’s 13 months old and he weighs just over 12 pounds. He’s certainly not suffering whatsoever, he’s actually still thriving. He really is a normal baby in so many ways: He cries, he goes to the bathroom, he wants his dirty diaper off… Jaxon is virtually perfect.”
The parents know that Jaxon will need a miracle in the long term, but are taking each day as it comes and relying on faith to help them through.
“We had a faith that we will continue the pregnancy and hopefully we wouldn’t lose him. And now we are today where he’s not showing signs of going anywhere. He is — you can tell — so loved, he has the brightest eyes, he recognizes so many things, he’s so alert. We are just aware of the miracle of what he’s doing and also the reality of what may happen tomorrow,” Brandon Buell told CNN.
By AnneClaire Stapleton
CNN’s Sara Delgrossi contributed to this report.