A Day In The Life Of Katie, The Girl No Doctor Can Diagnose

BarcroftTVPublished: August 31, 2017524,861 viewsVirality: 4%
Published: August 31, 2017

Nine-year-old Katie Renfroe suffers with a condition so rare that it doesn’t even have a name.

She was diagnosed with megalencephaly at birth, a growth development disorder characterised by the overgrowth of the brain. But that diagnosis does not explain the other symptoms that the little girl experiences and doctors have said her mystery condition is so rare, they are unable to identify it.

Katie’s mother Angie Renfroe has been awaiting a full diagnosis of her daughter ever since her birth and doctors have started to discuss the possibility of naming the unknown condition after Katie. The Florida resident said: “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.”

When Katie was first born, the family traveled to Hollywood, Florida to visit doctor Roman Yusupov – a specialist in pediatric genetics and pediatric cleft and cranio-facial disorders.
But unfortunately, he was unable to diagnose Katie and has continued to monitor her progress since then. He said: “I have never seen anything like it, she is truly unique and perhaps one in a million.”

Despite her disadvantage, Katie goes to a school for children with disabilities – but she is able to work on the computers and of course get involved in circle time with the help of her favorite teacher.

Videographer / director: Ryan Vanderploeg
Producer: Danny Baggott, Ruby Coote
Editor: Jack Stevens

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