Jaxon Buell had a condition called microhydranencephaly, which means he was born with 80 percent of his brain missing

By Rachel DeSantis
April 07, 2020 11:08 AM
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Jaxon Buell, the “miracle boy” who defied the odds after he was born with a rare condition that left 80 percent of his brain missing, has died, according to multiple reports. He was 5 years old.

Jaxon died in North Carolina on April 1, years after he was born with just part of his skull due to a birth defect called microhydranencephaly, his dad Brandon told WJXT.

“Jax passed away very peacefully, comfortable in my arms,” Buell told the outlet. “He was surrounded by his parents and his family and enjoyed so much love and snuggles in the final moments of his life and journey with us.”

Buell told Today that Jaxon’s death was unrelated to the ongoing coronavirus outbreak.

“[This] was something we always knew from the beginning would likely happen. We just didn’t know when,” he said.

Buell and Jaxon’s mom Brittany previously opened up about their son in 2016, telling NBC affiliate WTLV that doctors did not expect him to live past his first birthday.

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“His doctor specifically tells us he’s writing his own book and we’re along for the ride,” she said. “He shocks us every day.”

Jaxon was unable to walk or talk, but his parents shared his many milestones on the now-deleted Facebook page We Are Jaxon Strong, where followers saw him smiling and appearing to communicate with noises and eye contact.

“He’s our miracle baby. He’s our hero,” Brittany said in 2015, according to WJXT. “He’s definitely our little hero.”

The boy’s health reportedly took a turn in March, and he entered hospice care several weeks before his death.

“I have no idea how this healing process is supposed to go. All I know is how proud of my son I am, how much I will miss him, how much he has changed my life, and how much he has touched countless others,” Brandon told WJXT.

The grieving dad also addressed his son’s death on Instagram, reportedly writing that he would never forget Jaxon’s “beautiful bright blue eyes and his perfect smile.”

“I love you so much, Jaxon. I can’t wait to see you again someday in your perfect form, running and laughing in Heaven,” he wrote. “Enjoy the head start, son. You earned it by being the most perfect, the sweetest, and the strongest little boy ever.”

Microhydranencephaly is a rare disease in which the brain accumulates fluid, and does not fully form, according to the Genetic and Rare Disease Information Center.