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Family of SC infant with rare condition hopes to raise awareness

Davis recounts her emotions when her new born baby girl Charlee came into the world but she also remembers the first time she noticed something wrong.

NEESES, S.C. — "You can’t describe the moment you see your baby. It’s just an indescribable feeling," says Bethany Davis. 

Davis recounts her emotions when her newborn baby girl Charlee came into the world. But, she also remembers the first time she noticed something wrong. 

"Her chin was a little smaller and her nose was a little wider, and we were automatically like something looks a little different," says Davis. 

"The pediatrician came and noticed that she had no roof in her mouth and that she had Pierre Robin Syndrome."

According to the National Organization for Rare Disorders, Pierre Robin Sequence, often referred to as PRS, is characterized by a small lower jaw and displacement of the tongue, potentially obstructing the airway and causing difficulty breathing. 

The disease could range from causing a mild disturbance to life-threatening respiratory distress. 

According to the U.S. National Library of Medicine, 1 in 8,500 to 14,000 people are impacted. 

The more Bethany learned the more she feared for Charlee’s life.

"It’s scary, confusing, sad everything wrapped up in one," says Davis, "She can’t lay on her back because her tongue goes to her throat and closes her air off. In a car seat, if she’s too forward, her head goes forward and cuts her air off and her tongue goes back."

Melisa Hallman, Charlee's grandmother, started the #CharleesSmile Facebook page in an effort to make people aware of the rare disease. 

"I just thought about it in the middle of the night, mainly to bring awareness," says Hallman. "Just because when we were in Columbia, even the nurses there didn’t really know how to feed or really what it was about and just bring the awareness for how difficult it’s been to do the simple things like taking a bath changing a diaper changing her clothes." 

The Davis family has a visit planned to Massachusetts to visit several experts in the realm of PRS. 

Research shows surgery is possible to improve the jaw but most will require speech therapy or a second operation later on to improve speech.