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As DNA Mutates Expect More Deformed Children
You have to listen very carefully. But she actually said it. Her Mom, Tami, chuckles in glee and confirms they're "her first words." "Oh, oh."

Juliana Wetmore can't talk like most people. She sort of squeaks. But her mom heard her say, "Oh, oh!" You may be able to hear it too, if you listen carefully to the video.

It's a cause for great joy every time Juliana accomplishes a little step.

KARE 11 first introduced viewers to this little girl from Orange Park, Florida last December. (Click here to view the original story)

Her story touched many and has now been seen around the world.

Juliana has come along way since her birth.

Two years ago, when she was born, doctors didn't think she'd survive. She was born with Treacher Collins syndrome, a genetic abnormality that left her without half the bones in her face.

This very patient little girl has been a great patient and has lead to helped provide new information about her very rare disease. Dr. Mislen Bauer at Miami Children's Hospital has tested Juliana's DNA. He, along with other doctors, have found that Juliana's mutation is totally unique.

Dr. Bauer says her mutation has been not reported anywhere in the world.

Dr. Bauer says Juliana presents a challenge to doctors, "Juliana is the most severe case I've ever seen."

But doctors say Treacher Collins kids have "normal intelligence." And Juliana is progressing well in her efforts to learn sign language. Months ago it seemed she was grasping the signs but still just imitating "red" or "love," for instance.

Now she's obviously communicating original thoughts.

Tami says one of the most encouraging steps to her is seeing Juliana act like a normal two-year-old. She's mischievous, pouty and sometimes not a very nice little girl.

An example says mom, Juliana pinched her and then sat down and realized she'd goofed. Juliana then signed, "BE NICE."

Tami is hoping Juliana will be able to go to a pre-school soon and learn to mix in with the other children.

Juliana now is 2 1/2 and weighs 37 pounds.

Her weight has been a problem, but it has come down slowly. It's good progress, says her Dad. In fact, her nickename now is "porkchop."

A few weeks ago Juliana had surgery to try to strengthen and grow the bone in her skull.

Doctors used a new procedure involving an artificial bone protein designed especially for the head area. The family is still waiting to see if it worked.

One side effect of the surgery scared Juliana's family. Her eyes became extremely swollen. One eye was so puffed up the eyelid basically folded inside out. Her parents were worried she might lose sight in that one good eye.

But the swelling is down and Juliana has survived yet another medical procedure, one hurdle cleared, many await.

If the bone protein works well, next year may be "the big one" for Juliana. Doctors will try to bring the front of her face out to meet her nose.

The process frightens Thom and Tami. They've already endured 20 trips to the operating room and several close calls. But they say they're just praying they're doing the right thing for their daughter.

Their hope is Juliana will someday breathe on her own. "My biggest prayer for her is she'll be able to eat like a normal person," says her father Thom. He wants her to be able to pick up a bottle of water and actually drink it.

Now she just gets to put her tongue on chocolate or lemons (She likes lemons!) to get a taste. Her nutrition comes from a feeding tube in her stomach.

So how do Thom and Tami hang on? By faith Thom said last year, "God doesn't give you anything you can't handle." Now a year later he brings up that same thought. "It's not a cliche," he says. "God does not give you more than you can handle and you gotta handle it."

In Tami's words, "I think God made her this way to change the world because he knew Thom and I could handle it."

The family truly believes Juliana is already changing the world. Every once in awhile someone will still look horrified and stare at Juliana's disfigured face.

But more and more people just walk up and visit because they've seen Juliana on TV and they realize she's a special little girl.

Out in the Wetmore's backyard Juliana and her sister, Kendra, have an electric kids' car.

It's quite the site. Kendra steers with one arm and wraps her other arm around her sister. Juliana does the same. And there they go...arm in arm...puttering around the yard.

And, as children can do, Kendra expresses the best thought of all.

"I'm glad she's my sister 'cause she's the right sister for me." And why is that? "Because she's beautiful."

Maybe someday she'll understand the impact she's making on people.

One example of that impact came in the form of a letter the Wetmore family got from a family in Arizona.

Their daughter has a more mild form of Treacher Collins but was so embarrassed she tried to cover herself with a hat.

She watched Juliana's story and realized she was rather lucky. She now goes out in public, without a hat.

"Juliana can't speak but she's been the spokesman for so many," Thom says.

If you'd like to send words of encouragement or support to Juliana, click here to visit the family's Web site. Tami reads every message.



By Jeannie Blaylock, WTLV

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