This nine-year-old girl has a condition so rare doctors can't diagnose it

She can't speak, walk or eat solid food

Nine-year-old Katie Renfroe has a condition that doctors can’t diagnose.

When her mother Angie was about six months pregnant, they found out that the baby was going to be born with a condition called megalencephaly.

At birth, the condition was diagnosed - megalencephaly is a growth development disorder characterised by overgrowth in the brain, which is much heavier than average as a result.

But megalencephaly doesn’t explain the other symptoms Katie experiences, and no doctor has been able to work out what Katie has.

According to her mother, Katie’s main side effects include seizures, she can’t talk or walk, and everything she eats has to be puréed.

Katie has been checked for all sorts of other conditions, such as dwarfism, but the results always come back to say she doesn’t have any of them.

When she was younger, Katie’s family took her to see paediatric specialist Dr Roman Yusupov at Joe DiMaggio Children’s Hospital in Florida, USA.

“I have never seen anything like it, she is truly unique, perhaps one in a million,” Dr Yusupov said.

“I think she has what is known as an overgrowth syndrome.” This is where the soft tissue cells start to divide rapidly, and for Katie this has occurred in her face and brain.


 Katie

In her nine years, Katie has had numerous operations. She had brain surgery at just nine months old, she’s had her tonsils removed too, her cheeks have been downsized several times and she’s had two cysts removed from her head.

Her future prognosis is unknown, but with seven biological siblings plus step-siblings, Katie is never alone.

“Katie’s happy. She loves to do almost everything any other could would love to do,” mother Angie told Barcroft TV.

“She loves life and loves to be playing,” Angie explains, adding that Katie has a devious side too.

“She has emotions. If something hurts her she’ll cry, if something’s funny she’ll laugh about it.”

And the best thing about Katie according to her sister Megan? Her personality.