A Florida family is counting their blessings after their son celebrated his first birthday this past August.
It’s a milestone for any young family, but for the Buell family of Tavares, Florida, it holds a special significance.
Their young son, Jaxon, was born with a rare birth defect known as Microhydranencephaly which caused his brain to develop improperly and left him without most of his skull.
At the time of his birth, doctors gave him just a few days to live.
“They told us at first two weeks and once we got to two weeks, it was they changed it to two months, and then they changed it to two years,” Brittany Buell told WOFL News in Orlando, Florida. “So now his doctors are finally telling us ‘we don’t know.’”
“Jaxon is writing his own book. They don’t know.”
According to the U.S. Centers for Disease Control, Anencephaly is a birth defect which occurs when the nervous system does not develop correctly early in a pregnancy, and causes the baby to be born without part or all of the brain and skull.
Little Jaxon was eventually diagnosed was Microhydranencephaly, a more extreme form of the defect whereby the infant will lack even proper brain hemispheres. Jaxon has a fully formed brain stem, which is the part of the brain responsible for motor control, but his cerebellum and cerebral cortex did not form properly.
There is no known cure or prevention for this disorder, which CDC figures estimate affect 1 out of every 4,859 babies born each year.
For parents Brittany Buell, 27, and Brandon Buell, 30, that diagnosis was only part of a stressful year where they grappled with their son’s unique condition, on top of the regular challenges of parenthood.
“All of this was so new to us,” Brandon Buell said. “We were just looking for support, and luckily for us, family, friends, colleagues, and now people around the world have come forward with support.”
According to Boston.com, Jaxon was hospitalized multiple times during his first few months for issues with his feeding tube and multiple bouts with a virus.
Eventually, the family headed up to the Boston Children’s Hospital, one of the foremost pediatric institutions in the country, where they eventually received their diagnosis of microhydranencephaly.
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In the meantime, the family has chronicled Jaxon’s struggles on Facebook, and he has captivated over 150,000 followers with his resilience in the face of such a bizarre and crippling condition.
Using the hashtag #JaxonStrong, social media users have shown their support for Jaxon and his continuing struggles.
Meanwhile, in a touching post to his followers on Facebook Monday, Brandon Buell said he’s thankful for the same things so many other parents are: the simple miracle of his child’s birthday.
“Tomorrow, Jax will be 13 months old,” Buell wrote. “It’s hard not to think about how this all started and where we are today. Most importantly, Jaxon is still here with us, still learning, still developing, still thriving.”
“He’s back to smiling at us, always so happy in the morning after he wakes up and takes turns looking at both Mommy’s and Daddy’s face, seemingly as if he is so excited to start another day.”
For anyone looking to support the Buell family, a GoFundMe page has been set up to help pay for their continuing medical expenses.
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