Katie Renfroe is one brave little girl.
The nine-year-old from Florida was born with an abnormally large brain and head.
She cannot walk or talk and often suffers from seizures. Despite receiving emergency brain surgery at just nine months old, doctors have been left baffled by her complex condition.
Katie was initially diagnosed with the growth development disorder megalencephaly. This causes the overgrowth of the brain, but specialists later ruled this out.
Katie’s mother Angie has now been told the unnamed condition could even be named after her daughter.
Angie 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.’
‘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.’
When Katie was first born, the family travelled to Hollywood, Florida, to visit doctor Roman Yusupov.
Yusupov is a specialist in pediatric genetics and craniofacial disorders. But sadly even with his extensive knowledge he was unable to diagnose Katie.
He said: ‘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’s condition means she has to be fed through a tube in order to get her nutrients. Her little body has also been put through various tests and surgeries.
Meanwhile Katie attends a school for children with disabilities – she is able to work on the computers and enjoys playing with the other kids.
Katie comes 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.’
‘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,’ says Angie.
‘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.’