Tami Wetmore had gone through a difficult labor and still hadn’t seen her daughter. Her husband, Thom, took a photo of the newborn to prepare her. Even so, when she held her close, all she could manage to whisper was: “Where is she? Where is her face?”
Juliana was born with Treacher Collins syndrome, a genetic condition that left her missing up to 40 % of the bones in her face. At age one, her story went viral and people dubbed her “the girl born without a face”. Among the thousands of messages of support was one cruel comment: someone wrote that they should have “put her down”. Her doctor called it sheer ignorance.
At 11 years old, she had already undergone 45 surgeries. She communicates with her friends using sign language, speaks although she is difficult to understand, and can hear even whispers thanks to a bone-anchored hearing aid. She eats almost everything through a feeding tube, but manages to swallow and digest some things, like gelato. She says she is now comfortable with her appearance, so her parents aren’t pressuring her to have more surgeries.
The Wetmores also adopted Danica, a girl from Ukraine with the same condition. Now the two sisters swing together at recess and sign to each other.
