Katie is very rare. She has not been diagnosed with anything.
They're still trying to figure out what she has.
We found out when I was about six months pregnant with her
that she was going to have megalocephaly.
We still don't know what else she has.
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.
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.
Katie's happy. She loves to do almost anything
that any other kid could possibly do.
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 can make us fall.
She likes throwing things at us sometimes,
and she finds it very hilarious.
She will actually just giggle at us,
like "Oh, yeah, I've done something big!"
She has emotions. She goes...
If something hurts her, she'll cry about it.
If something's funny to her, she's going to laugh about it.
I think the best thing about Katie is her personality.
She's very, like, outgoing and wild.
And she has an amazing laugh.
I mean, like, she knows she can't do certain things.
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 likes to drink.
She likes Coke and tea,
and she even likes to get into her day's coffee,
and stuff like that.
But at this point, as far as I know,
no-one knows anything that's wrong with her.
They checked her for dwarfism, they checked her for...
..so many other ones that I can't even remember at the moment,
and 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.
I have never seen anything like it. She is truly unique,
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,
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.
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's had two cysts removed off of her head.
So she's had quite a few surgeries.
A lot more than any baby should have had.
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 who she is.
You never know how long she's going to live.
Like, no-one expected her to even come home...
And she's nine now, so that's crazy.
I used to be very nervous to, like, look after Katie on my own.
Like, on my own time, I'd run outside
and be like, "Katie's having a seizure!"
Other than, like, the seizures and all, I'm OK with it now.
I really think that her future is going to be
as happy as we could possibly make her future be
and as content as we could 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'll just laugh or she'll smile.
You know, she gives us so much, she just makes us so happy.