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Hartselle 3-year-old suffers from Chiari malformation

Nevaeh Johns’ mother Tiffany said she first noticed her daughter’s breathing issues when Nevaeh was an infant. At 6 weeks oldbaby Neveah would wake up in the middle of the night gasping for air.  

Nevaeh now uses a CPAP machine while sleeping to treat both central and obstructive sleep apnea, has had her tonsils and adenoids removed and just underwent partial decompression surgery at Vanderbilt, where surgeons removed a piece of her skull and spine to make room for her continued growth.  

The 3-year-old daughter of Tiffany and Josh Johns of Hartselle has what is called Chiari malformation  structural defects in the base of the skull commonly referred to as “crowding of structures.” SimplyNevaeh is quickly growing out of room in her skull, and its causing her an array of harsh symptoms.  

She also has an 11-millimeter cyst on her brain that doctors are closely monitoring.  

Nevaeh suffers from migraine headaches that are oftentimes debilitating – sometimes up to five to six headaches a day. Nausea and vomiting often accompany the child’s headaches, along with other symptoms. 

“There is too much pressure from her cerebellum that is pushing on her brainstem and causing the issues,” Tiffany said. “Due to everything going on, her doctors said our best option was to go ahead with the surgery.”  

Since her July 30 surgery, however, Tiffany said some of Nevaeh’s issues have worsened.  

“I’m afraid it hasn’t helped, and it might be worse,” she said, “especially her sleep apnea. Her snoring is a lot louder.”  

Tiffany said they will return to Vanderbilt in three months so Neveah can undergo more testing and another sleep study to determine the next steps. She will also have another swallow test and a sedated MRI.  

“If she fails those tests (at three and six months), that’s when we talk about taking a bigger part of her skull out,” Tiffany said 

A full decompression is a much riskier surgery – one Tiffany said she hopes they can avoid. Neveah would never be able to play sports and would have to be careful for the remainder of her life, as after that surgery, an injury to the area can result in paralysis or death. Chiari malformations are unfortunately something that cannot be cured – she will have it her entire life,” she said.  

Neveah takes a variety of medicines that aid in opening her airways and alleviate her breathing issues.  

Tiffany started a group on Facebook she called Team Neveah so friends and family could easily keep up with the little girl’s journey. She now has followers from as far away as Texas, New York and Pennsylvania, and Tiffany said she takes great comfort in knowing that people all over the country are in Neveah’s corner.  

The family sells T-shirts, water bottles and other merchandise to help cover their medical costs. There is also a GoFundMe page for those who want to donate to the family.  

“As a mother, going through this with her, I can’t even count how many times I’ve cried,” Tiffany said. “Believe it or not, even at her age, she sees the support. People have begun sending her cards in the mail … There’s a group in Muscle Shoals who have heard her story and sent her cards, mermaid blankets and dresses … Those ladies have been amazing to her. 

“We’re having to do our own physical therapy, and she still doesn’t have the full range of motion back yet, but she’s getting there,” Tiffany added. “We’re having to keep Tylenol and Motrin in her every three hours to make sure she’s not in pain.” 

Shortly before her surgery last month, Neveah got to meet one of her heroes: Morgan County Sheriff Ron Puckett. Her dad, Josh, is a corrections officer in Madison County, and the family made the connections to make the meet-and-greet a reality.  

Aside from her health issues, Neveah is a typical, happy-go-lucky child. She likes to watch Doc McStuffins and Disney’s Frozen and Moana. She loves her parents and her little brother Nicali, and her favorite color is pink 

Neveah will turn 4 years old Dec. 14.