We live in a world of people who incessantly complain about things they can’t change. The things we complain about tend to be trivial things which, in the grand scheme of things, shouldn’t really affect our happiness or well-being.
And I’m definitely one these people who sweats the small stuff. I’m always moaning about things that really aren’t worth spending any time on. I know deep down, however, that I’m pretty lucky.
Having lived a perfectly “normal” life, I could never begin to imagine what it must be like living with a rare medical condition which affects my physical health, the way I think, the way I communicate and the way I appear physically.
Well, that’s exactly what a nine-year-old girl by the name of Katie Renfroe from Florida is suffering from. When Katie was born, she was diagnosed with megalencephaly, which is a growth development disorder whereby the brain has overgrown tremendously in the womb.
While doctors are certain that Katie has megalencephaly, the condition doesn’t account for Katie’s other symptoms. In fact, they maintain that whatever condition Katie has is so rare and under-researched that they are unable to name it.
Katie’s mother, Angie Renfroe, has been forced to watch her daughter grow up with such a debilitating condition, knowing that doctors may never be able to give her the answers to so many of her questions. Mainly, if there is any chance her daughter can be cured.
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.