ANGIE RENFROE: Katie is very rare. She has not been diagnosed with anything.
They are still trying to figure out what she has.
ANGIE RENFROE: We found out when I was about 6 months pregnant with her that she was going
to have megalencephaly. We still don’t know what else she has.
COMM: 9-year-old Katie was diagnosed with megalencephaly at birth, a growth development
disorder characterised by overgrowth in the brain. However, this diagnosis does not explain
the other symptoms Katie experiences.
ANGIE RENFROE: Her main side effects, she has seizures and they can go from ones where
she just, kind of, stiffens up a little bit to where she has the ones where she jerks
really bad. She cannot talk. She doesn’t walk.
ANGIE RENFROE: I do not know why her face is the way it is. I do know that when she
has surgeries, they tell us the only thing that they moved from her face is, like, fatty tissue.
COMM: Katie comes from a large family. She has 7 biological brothers and sisters plus
stepsiblings. So she is never short of care.
ANGIE RENFROE: Katie is happy. She loves to do almost anything that any other kid could
possibly do, her age. She just loves life, loves to be playing. She also has a little
devious side to her where she likes to try to booby trap the house to see if she could
make us fall. She likes to throw things at us sometimes and she finds it very hilarious.
She will actually just giggle at us, like, ‘Oh, yeah. I have done something big.’
She has emotions. She goes, if something hurts her, she will cry about it.
If something is funny to her, she is going to laugh about it.
MEGAN RENFROE: I think the best thing about Katie is her personality. She is very, like,
outgoing and wild and she has an amazing laugh. I mean, like, she knows she can’t do certain things.
ANGIE RENFROE: Everything that she eats has to be pureed. She can eat a little bit by
mouth when she chooses to. She can drink by mouth and she really loves to drink. She likes
coke and tea and she even likes to get in to her daddy’s coffee and stuff like that.
ANGIE RENFROE: But at this point, as far as I know, no one knows anything that’s wrong
with her. They have checked her for dwarfism. They have checked her for so many other ones
that I can’t even remember at the moment. But, and everything comes back that she doesn’t
have it. And if they can’t figure out what she has, they will just name it after Katie.
COMM: When Katie was first born, the family travelled to visit paediatric specialist,
Doctor Roman Yusupov. He was unable to diagnose Katie. But has continued to monitor her progress
since then.
DOCTOR ROMAN YUSUPOV: I have never seen anything like it. She is truly unique or, perhaps,
one in a million. Her diagnosis is truly interesting. I think she has what is known an ‘Overgrowth
Syndrome,’ in which different body parts start to increase in size, hypertrophy. Because
the muscle cells and other cells, soft tissue cells start to divide rapidly. So, in her,
unfortunately, it happened in her face and in her brain.
COMM: Due to Katie’s mysterious condition, she has had numerous surgeries since birth
starting with brain surgery at just 9 months old.
ANGIE RENFROE: Since birth, Katie has had her brain surgery, her tonsils removed, her
trach surgery, her feeding tube. They downsized her ear, her tongue, her cheeks have been
downsized several times and she has had two cysts removed off of her head. So she has
had quite a few surgeries. A lot more than any baby should have had.
COMM: As Katie’s condition remains undiagnosed, her future prognosis is unknown.
ANGIE RENFROE: She just makes the most of what she has. I don’t really think that
she knows the difference. She wakes up and that’s, that’s who she is.
MEGAN RENFROE: Never know how long she is going to live. Like, no one expected her to
even come home and she is 9 now. So, that’s crazy.
CYNTHIA MASON: I used to be very nervous to, like, look after Katie on my own. Like, on
my own turn I would run outside. I am like, ‘Katie is having a seizure.’ Other than,
like, the seizures and all, like, I am okay with it now.
ANGIE RENFROE: I really think that her future is going to be as happy as we can possibly
make her future be and as content as we can possibly keep her. She makes me happy, you know.
We can be having one of the rottenest days in the world and we do have some of those.
And she will just laugh or she will smile, you know. She gives us so much. She just makes
us so happy.