News, Culture & Society

Girl with big brain has rare condition with no name

A nine-year-old girl with an abnormally large brain and head has baffled doctors who say her condition is so rare they are not able to identify it. 

Katie Renfroe cannot walk or talk and suffers with seizures and needed brain surgery at just nine months old. 

She was initially diagnosed with growth development disorder megalencephaly which causes overgrowth of the brain but medical experts later changed their minds.

Mother Angie, from Florida, has now been told the unknown condition could be named after Katie. 

She said: ‘Katie is very rare – she has not been diagnosed with anything and they’re still trying to find out what she has.

 

Katie Renfroe has some sort of disorder which causes an overgrowth of the brain

The 9-year-old has had many surgeries including an operation on her brain at nine months old

The 9-year-old has had many surgeries including an operation on her brain at nine months old

‘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.’

The Florida child's condition has baffled doctors who say they may name it after her

The Florida child’s condition has baffled doctors who say they may name it after her

‘One in a million’

When Katie was first born, the family travelled to Hollywood, Florida, to visit doctor Roman Yusupov, a specialist in pediatric genetics and craniofacial disorders.

But unfortunately, he was unable to diagnose the girl 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.

Specialist Roman Yusupov says Katie's condition may be 'one in a million'

Specialist Roman Yusupov says Katie’s condition may be ‘one in a million’

The girl has plenty of love coming from a large family with seven biological siblings

The girl has plenty of love coming from a large family with seven biological siblings

‘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’s condition means she has to be fed through a tube and she has endured numerous surgeries. 

Ms Renfroe said: ‘Since birth, Katie has had her brain surgery, her tonsils removed, her feeding tube, they downsized her ear, her tongue, her cheeks have been downsized several times and she’s had two cysts removed off of her head.

‘So yeah, she’s had quite a few surgeries. A lot more than anyone should have had.’

Katie's sister Megan Renfroe described her as 'very outgoing and wild'

Katie’s sister Megan Renfroe described her as ‘very outgoing and wild’

‘She just loves life’

Katie attends a school for children with disabilities – but she is able to work on the computers and interacts with the class with the help of her favourite teacher.

And she is never short of love and care at home, coming from a large family with seven biological brothers and sisters plus step siblings.

Katie’s sister, Megan Renfroe, 18, said: ‘I think the best thing about Katie is her personality – she’s very outgoing and wild. She has an amazing laugh!’

Angie added: ‘Katie is happy. She loves to do almost anything that any other kid can possibly do.

‘She just loves life. She also has a little devious side to her where she likes to try and booby trap the house to see if she can make us fall. And she finds it very hilarious.

‘She has emotions – if something hurts her, she’ll cry about it. If something is funny to her, she’s going to laugh about it.’

As Katie’s condition remains undiagnosed, her future prognosis is unknown.

‘She just makes the most of what she has and I don’t really think that she knows a difference, she wakes up and that’s who she is,’ said Ms Renfroe.

‘I really think that her future is going to be as happy as we can possibly make it and as content as we can possibly make her.

‘We can have the darkest days in the world, but she’ll just laugh or smile and it gives us so much. She just makes us happy.’ 

Read more at DailyMail.co.uk


Do you like it? Share with your friends!


Comments are closed.