When Juliana Wetmore was born in Florida in 2003, doctors and her parents immediately recognized that she had an exceptionally severe craniofacial condition. Juliana was diagnosed with Treacher Collins syndrome (TCS), a rare genetic disorder that affects the development of the bones and tissues of the face. In her case, the condition was described as one of the most severe ever documented.

Treacher Collins syndrome can affect the cheekbones, jaw, ears, eyes and palate. In more severe cases, the unusually small jaw and other facial abnormalities can also create serious problems with breathing, feeding and hearing. Modern craniofacial teams therefore treat patients according to their individual needs, often requiring multiple specialists and procedures over many years.

Juliana’s facial anatomy was particularly unusual. Reports from Miami Children’s Hospital stated that she was born without normally developed upper-jaw structures, cheekbones, eye sockets and external ears. Later reports estimated that she was missing approximately 40 percent of the facial bones that would normally form the face.

Her early childhood consequently involved extensive medical care. At Miami Children’s Hospital’s Craniofacial Center, surgeons worked to address the structural problems affecting her face and airway. One documented operation involved opening her left eye and reconstructing part of her skull and lower jaw. By the time she was two years old, she had already undergone numerous procedures, and doctors anticipated that additional operations would be necessary as she grew.

Juliana’s treatment was not simply cosmetic. Some procedures were intended to improve essential functions such as breathing, feeding, vision and hearing. Children with severe Treacher Collins syndrome can require airway procedures, jaw reconstruction, palate repair and hearing support depending on the particular anatomy involved.

By 2014, reports stated that Juliana had undergone 45 surgeries over 11 years. Despite the extraordinary number of procedures, she was attending school, communicating and participating in activities with other children. Her father, Thom Wetmore, emphasized that after spending time with her, people quickly stopped focusing on her facial differences and saw her personality instead.

Her story also reached a much wider audience through the documentary “Born Without a Face,” which followed Juliana and her family and introduced viewers to the medical challenges associated with severe Treacher Collins syndrome. Miami Children’s Hospital later described how the documentary helped raise awareness about children living with craniofacial differences.

Juliana’s family story continued to receive attention for another reason. Inspired in part by their experiences with Juliana, Thom and Tami Wetmore later adopted Danica, a girl from Ukraine who also had Treacher Collins syndrome but a less severe form. Reports described the two girls developing a close relationship while sharing an understanding of the challenges associated with the condition.

It is worth clarifying that the phrase “born without a face” is a media description rather than a medical diagnosis. Juliana was not literally born without a face; she was born with an exceptionally severe form of Treacher Collins syndrome that resulted in major underdevelopment or absence of numerous facial structures. The medical literature and hospital records provide a much more precise description of her condition.

Juliana’s documented journey illustrates the complexity of treating severe craniofacial disorders. Her treatment required repeated reconstructive procedures, long-term monitoring and coordinated specialist care rather than a single operation. Her case also became widely known for showing how a child with profound anatomical differences could continue developing, attending school and participating in everyday life.

Sources: Nicklaus Children’s Hospital (formerly Miami Children’s Hospital); Medical Daily; WFAA/ABC; The Mighty.