A Paxton family's love surrounds a special girl

Published: Wednesday, November 28, 2012 at 16:42 PM.

Danial remembers getting his first peek at his “Katie-Bug” while she lay in an incubator right after the delivery.

“What it looked like was a small little body hooked to these two grapefruits — her cheeks,” he says.

In a portrait taken when Katie was 2 months old, she is curled up, sleeping, her cheeks nestled in the lace and satin of her pale pink dress.

As Katie has grown, so have her cheeks. Extra skin on top of her cheeks gives them a mottled brown look. Her ears are also deformed and she has some hearing loss.

Her tongue doesn’t fit in her mouth, but ever resourceful, she has still figured out how to suck her two fingers and her thumb.

She doesn’t have seizures anymore, but her muscles tighten up, causing a stiffness that rolls from one side of her petite frame to the other.

When that happens, whichever family member is closest pats her back, rubs her arm or pinches her feet to help her snap out of it.



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