Florida girl's rare disability causes abnormally large facial features

PAXTON, Fla. – It's hard to know what Katie Renfroe thinks.

She laughs when her sisters and brothers sing and dance and act crazy in front of her. Loud noises thrill her.

She likes sweets and some salty snacks, even though she gets most of her nutrition through a feeding tube. She watches the Disney Channel with the rapt attention of most 4-year-olds.

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But Katie was born with a rare disorder that makes her quite different than most little girls her age.

Diagnosed with megalencephaly before she was born, some of Katie's facial features are abnormally large.
She also had part of her brain removed as an infant to control the seizures that were happening as often as 50 times a day.

"All we know is we give her all the love, all the attention we know how to give her," says her mom, Angie Renfroe. "We've never treated her like she has a handicap."

Katie is the sixth of Angie and Danial Renfroe's eight children, the one who came along after doctors told them Angie wouldn't be having any more children.

In the first trimester, doctors noticed anomalies on her ultrasound. The baby's head was "oddly shaped," her parents were told.

At three and a half months, a specialist told her parents that Katie's head was three times larger than normal. He gave them the name of Katie's rare disorder, but it meant nothing to the rural Paxton couple.

He also told them what her life -- and their life -- would be like.

"He was trying to help us understand that she might be a vegetable," Danial says. "She ain't nowhere near what they said she was gonna be."

The specialist told them to come back in two weeks after they had decided what they were going to do.
The couple drove home from Sacred Heart Hospital in Pensacola. As soon as they got there, Angie went into their room, got into bed and cried.

Angie's choices

"I tried to figure out how we were going to deal with this," she said.

And then she realized she had choices.

"You can lay here, you can cry or you can leave this in God's hands, which is where she belongs," Angie remembers thinking.

Next, she talked to God.

"If you let me have her, I'll raise her and take care of her the best I know how to do for as long as you give her to me."

Having made peace with her decision, she talked to Danial.

"I told him, `If you can't handle it -- they're telling us it's going to be bad -- go now," she says.

He recalls looking at her like she was crazy. He wasn't going anywhere.

Katie was delivered by cesarean section at Sacred Heart on Jan. 28, 2008.

Angie doesn't remember much about the delivery except seeing her daughter's "big, pretty cheeks."

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.

'How to cope with things'

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.

"I've learned a lot," says 13-year-old Megan of having Katie as a sister. "I have learned how to cope with things.When we see other people like her, we actually know how they feel."

The family takes Katie wherever they go, but have never gotten accustomed to the way strangers respond to their little girl.

A few are kind; most stare. Some make comments that hurt.

Danial says when they go out he puts up an imaginary line around him and his family, and hopes no one crosses it.

"Kids are cruel," he says. "And it ain't only kids. It's just hard. If you have a kid like that, you have got to get your head straight," he says.

The family lives outside of Paxton in a mobile home that has been expanded as the family grows.

Each older child has his or her own room. The beds are neatly made and possessions, most donated by kind strangers, are arranged on dressers and shelves. The three youngest children sleep with Angie and Danial, piling into their king-sized bed.

In addition to the five older kids, Katie has two younger siblings, 3-year-old Kenneth and 1-year-old Emalee.

Neither Angie nor Danial work, although he receives disability. But they don't ask for help and are almost entirely self-sufficient.

First of several surgeries

On Tuesday, they will pile into their 1995 van and drive to Hollywood, Fla., where a surgeon at Memorial Hospital will perform the first of as many as seven surgeries on Katie.

"They're going to downsize her cheeks, fix her ear, shorten up her tongue," Danial says. "Once she gets rid of this weight, she'll be able to stand better."

They will be in South Florida for at least two weeks for the first surgery.

Christmas, when it comes, will be modest, with a few gifts for the children from Catholic Charities.

They don't need much to be happy, except for each other.

"I'm grateful for my family, my kids, no matter how wild they get sometimes," Angie says, smiling. "I still love them."

And since making her decision to go forward with her pregnancy five years ago, she has never looked back.

"I'm a firm believer," she says. "If God gives you something, don't throw it away."