Regarding the unnamed condition, Katie's mother spoke candidly about the moment she found out her daughter would be different:
"Katie is very rare – she has not been diagnosed with anything and they’re still trying to find out what she has. We found out when I was about six months pregnant with her that she was going to have megalencephaly.
"But I do not know why her face is the way it is – I do know that when she has surgeries the only thing they move from her face is like fatty tissue.
At this point, as far as I know, no one knows anything that is wrong with her. They’ve checked her for dwarfism, they’ve checked her for so many things that I can’t even remember – but everything comes back that she doesn’t have it.
And if they can’t figure out what she has, they’ll just name it after Katie."
Katie's condition has a number of unidentifiable symptoms. She experiences seizures, she cannot walk or talk and she also has to be fed through a tube.
Soon after Katie's birth, her parents were advised to pay a visit to Roman Yusupov, a specialist in Hollywood, Florida.
However, even he wasn't able to find a diagnosis for Katie, but is still working on reaching a conclusion.
"I have never seen anything like it, she is truly unique and perhaps one in a million.
Her diagnosis is very interesting. I think she has what is known as an overgrowth syndrome in which different body parts start to increase in size."
Katie has had to go undergo a number of surgeries since she was a baby. In fact, she had her very first surgery when she was just nine months old.
Katie currently goes to a school for kids with various disabilities. She has a happy and relatively normal home life and comes from a big family with seven other kids.
Katie Renfroe is clearly a very special girl with an extremely loving family. Although most people's initial reaction upon hearing her story may be be one of shock and pity, there's clearly little need for that. Katie has so far led a life filled with love and compassion, and it shows!
We wish the very best for her entire family, and hope that one day doctors are able to give her the answers and standard of life she deserves.