One family in Orlando, Florida is convinced their baby is going to defy the odds. He may have been born with microhydranencephaly, a developmental abnormality affecting the brain. What has many scientists puzzled is that it is still unknown what causes microhydranencephaly, but a gene mutation in utero and a parent carrying a mutated gene, are considered factors. Babies born with microhydranencephaly are not expected to live a long time. Some of the symptoms that come with this genetic and congenial disease include extreme microcephaly, scalp rugae, profound developmental delay, and severe intellectual disability.His parents prefer calling him Jaxon Strong!
It was during Brittany’s 17-week ultrasound that the couple learned something was not right.
When Brittany received a call from the doctor, the initial prognosis was that the baby had spina bifida. More ultrasounds followed with another diagnosis; Dandy-Walker Syndrome.
Brandon and Brittany were told the baby might not survive birth.
“The very first memory I have of Jaxon is I heard a real faint cry,” Brandon revealed.
He says he prepared his wife prior to showing her their firstborn. “Just so you know, his head is small,” he warned her.
Jaxon was born with 80% of his brain missing.
Nonetheless, Jaxon had a strong heartbeat and his breathing was great.
The baby couldn’t nurse, he ate through a feeding tube instead.
Doctors told them Jaxon would not live past his second birthday.
They learned how to feed him through a tube, cuddle, kiss him, and enjoy being proud parents.
Brandon recalled that his happy baby was exhibiting fussiness they hadn’t seen before.
They were squeezed in and finally they had their answer; Jaxon had microhydranencephaly.
“If they’re able to survive it, they’ll settle down and they’re able to communicate with immediate family. Some children with microhydranencephaly lasted all the way to their 30s,” Brandon added.
They explained that parts of the brain responsible for those areas are not there.
“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,” he said.
Jaxon lets his parents know when he doesn’t like something by scrunching his face or spitting it out.
Jaxon likes are ice cream, mashed-up avocados, squash, and carrots.
The Buell’s credit the fruits and vegetables for making them stronger.
“He sings that you’re going to wake up one day 100 years old and your life will be gone — don’t blink because you’ll miss it. We make sure every day is something special for Jaxon so we don’t miss that,” Brandon admitted.
“We celebrate Jaxon’s life every single day. We try to make it special for him,” Brandon explained. “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.”
Because he is growing his medication has to be adjusted every couple of months.
Brandon says his son says “mommy,” and “daddy.”
The organization’s mission is to “raise awareness and funds for neurological research, advocate for individuals living with disabilities and share the belief that every life has value and a purpose.”
“They started with two days, two weeks, two months and maybe two years. We believe he can be here as long as he wants to,” Brandon said.
