Juliana, 'the girl born without a face,' has been through 45 surgeries in the past 11 years.

2502 22 1 LINKEDIN 9 COMMENTMORE

JACKSONVILLE, Fla. -- Juliana Wetmore is known around the world as "The Girl Born Without a Face." Her story went viral a year after she was born.

Her face didn't look human when she was born.Her mother, Tami, was so shocked at the delivery, she could barely whisper, "Where is she? Where's her face?" Now 11-year-old Juliana has been through 45 surgeries.

In fact, her dad, Thom Wetmore, took a photograph to show his wife to try and brace her for what she was about to see. (Tami had a rough delivery and hadn't seen her daughter yet.)

Initially, not everyone was supportive. In fact, one person put out this message on social media: "Damn thing should have been euthanized." That comment horrified Juliana's doctor and others. They called it sheer ignorance.

Juliana has a genetic condition called Treacher Collins. She's missing up to 40 percent of the bones in her face.

Juliana's parents believe their daughter is still "showing the world" that if you don't look inside people you're making a terrible mistake.

Cards and emails poured in about Juliana. Some parents have said they use Juliana's story to teach their children that true beauty is not defined by outward looks.

"This story is much bigger than us or Juliana," Thom said.

Now Juliana attends an elementary school in Clay County.

She signs rapidly and communicates easily with her friends. She can talk, even though it's a bit difficult to understand. Her parents are confident that will improve, especially after the tracheotomy tube comes out someday. (That's one of their goals.)

The other goal for Juliana is that she will be able to eat on her own. Right now she's receiving liquid nutrition through a tube. But they are seeing some small signs, she's able to swallow and digest some items, such as Italian Ice.

Juliana has a Baha-bone anchored hearing aide, which, Tami says, allows her to "hear perfectly with them on." Tami said Juliana "even hears whispers with them."

Juliana has expressed to her parents that she's satisfied now with how she looks. They don't want to pressure her into any more surgeries, although the family will consider an operation this summer to structure her cheeks into a more normal size.

Her older sister, Kendra, helps support Juliana. Kendra's quick to tell her, 'I love you."

Juliana has another special sister, Danica. Tami said she went online and Googled "Treacher Collins adoptions" and found a photo of a little girl in an orphanage in Ukraine. Danica's medical condition is not as severe as Juliana's.

Tom and Tami knew they had the experience -- and the love--to help Danica. So they spent two years on the adoption process.

Danica and Juliana sign to each other and swing together on the playground at school. It's reassuring to Tom and Tami the sisters will always be able to understand each other's challenges, when other people may not have a clue.

"God never gives you more than you can handle. You have to choose to handle it", said Tom.

Autoplay
Show Thumbnails
Show Captions
2502 22 1 LINKEDIN 9 COMMENTMORE
Read or Share this story: http://www.firstcoastnews.com/story/news/health/2014/05/21/born-without-face-juliana-treacher-collins/9336489/