By Jeannie Blaylock
First Coast News
ORANGE PARK, FL -- 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 I heard her myself say, "Oh, oh!" (Play the video and you can hear it, too.)
It's a cause for great joy every time Juliana accomplishes a little step.
One year ago today we first put Juliana's story on First Coast News.
Since then this little girl from Orange Park has captured people's hearts all over the world.
Her story is by far the most popular story we've ever had on our website. Literally millions of people around the world are following Juliana now.
We shared Juliana's story with a production crew from England.
Their documentary airs repeatedly on Discovery Channel and brings in even more fans cheering on Juliana.
So how far has Juliana come?
A remarkably long way. At birth doctors thought she'd die. She was born with Treacher Collins syndrome, a genetic abnormality. She's missing more than half the bones in her face.
The new medical information about her case comes from Dr. Mislen Bauer at Miami Children's Hospital. Doctors have tested Juliana's DNA. They've found, among known Treacher Collins cases, Juliana's mutation is totally unique.
I asked Dr. Bauer, "Has it ever been reported anywhere in the world?" Her answer: "Nowhere in the world."
Juliana presents a challenge to doctors. As Dr. Bauer says, "Juliana is the most severe case I've ever seen."
But doctors say Treacher Collins kids have "normal intelligence." And Juliana is progressing well learning 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.
I was tickling her toes, for example, and all the sudden she looked up and signed "SILLY."
Tami says one of the most encouraging steps to her is seeing Juliana act like a normal 2-year-old. Mischievous. Pouty. Sometimes not even nice.
We watched Juliana pinch Tami and then sit down and realize she 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.
The weight has come slowly but it's good progress, her Dad says. 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 an artificial bone protein, a brand new procedure, especially for the head area. The family is still waiting to see if it worked.
A side effect of the surgery, though, 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.
Now their fears are gone. The swelling is over and Juliana has crossed one more medical hurdle.
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. Also, Thom says, "My biggest prayer for her is she'll be able to eat like a normal person." 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. The feeding tube in her tummy will, they hope, eventually be removed.
So how do Thom and Tami hang on? Thom told us a year ago, "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.
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.
For example, the Wetmores got a letter from a family in Arizona.
Their daughter has a more mild form of Treacher Collins but is so embarrassed she tried to cover herself with a hat.
She watched Juliana's story and feels so much better about herself she'll now go out in public.
"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 website.
Tami reads every message.
First Coast News