Updated 16 May 2018

Little girl forced to live with undiagnosed condition

Her mother believes that all they can do is love her.

Her mother believes that all they can do is love her.

Her head and cheeks are oversized, but she has the body of a normal little girl.

Katie Renfroe’s (10) condition is so strange, doctors aren’t sure what it’s called.

Even as a foetus Katie, Los Angeles in the US, was diagnosed with Megalencephaly – a condition which causes the brain to be abnormally large – but after she was born she had symptoms which aren’t usually associated with the condition.

Nobody knows why her face has grown so big and she also suffers as many as 50 epileptic fits a day. As a baby a portion of her brain was removed in order to bring the frequency of her seizures under control. Her mother, Angie, says that no one knows what seems to be wrong with her daughter. “They’ve already tested for dwarfism. They’ve checked for so many things, I can’t even remember – and every test seems to come back negative.”

Katie has undergone various operations, she’s received a feeding tube and they’ve already made her one ear, tongue and cheeks smaller.

“I think the best thing about Katie is her personality,” says her older sister, Megan. “She’s a big extrovert and can be wild. She’s an amazing laugh.”

According to her mother Katie wants to do the things that other kids do.

In 2012 Angie told the Daily Mail that doctors warned them before the birth that Katie would have an incredibly difficult life, and asked them if they wanted to terminate the pregnancy. They never even considered having an abortion.

Katie’s father, Danial, explains that when she was born she looked like a little girl’s body that had become attached to two big grapefruits – her cheeks. “All we know is that we have to give her all the love and attention we can,” he says. “We’ve never treated her like she was disabled or different.”

In 2013, when Katie was five years old, her mother said that her daughter’s never bored and is always marvelling at what’s happening around her. “She’s a wonderful, beloved little girl,” Angie said.

When Katie was born Angie says it was hard for her to believe that her daughter was going to survive.

Still, her only wish for Katie was that she’d get better. “It was all worthwhile. I wouldn’t change a single thing . . . I thank God for her.”