Juliana Wetmore – Girl without a Face

February 17, 2014 | 1

Many may not know of the name Juliana Wetmore, but this is a girl who was born without a face. Juliana suffers from a rare genetic disorder called Treacher Collins Syndrome. The condition affects less that 0.01% of the population. The condition is characterized by elongated or sagging eyes, missing or small ears, and other defects of the face including the nose and the mouth. Although the condition is very rare, what makes Juliana stand out is the fact that in her case, the deformation is very severe. When her mother went for pre-natal scans, the doctors thought that the baby had a cleft palate, and it was not until the day she was born that they realized that she suffered from Treacher Collins Syndrome.

Treacher Collins syndrome (TCS) is a rare genetic mutation that interferes with the proper formation of the skull. This includes the cheeks and jaw bones. In the case of Juliana, the malformation was so severe that she required plastic surgery to uncover her left eye, and open an airway for breathing. One of the doctors at Shands Jacksonville Medical Centre, Dr. Teng said that he had never seen a case as severe as Juliana’s. The medical personnel had to request a cat scan to see if the brain had been properly formed and they were happy to see that there was nothing wrong with her brain. The case of Juliana was caused by the presence of another gene that was also mutated and this amplified the condition.

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Juliana was born without ears and had a bone condition hearing aid installed so she could hear noises and speech. Since her mouth would not allow her to speak, Juliana had to learn how to communicate using sign language. She has to be fed through a pipe in her stomach since her mouth cannot allow her to eat. Juliana has been in and out of surgery such that by the time she was 2 years old, she had been through 2 major surgeries and a myriad of smaller ones. Her parents have been besides her, and the US Navy, where her father works as a flight engineer, picked up a $3 million hospital bill that she had accrued.

The gene still continues to pose a risk to her, and she has had several bone grafts to her skull in order to stop it from developing more holes. The bone grafts led to the removal of one of the sections of her ribs, in order to plug a hole that had been developing in her skull. The rib was also used to help in building a nose for her. She required surgery for another 2 years, so that her face could be completely rebuilt. Juliana is now 8 years old and has progressed well. The strong-willed girl has even started going to school and has gained a lot of autonomy. Her parents also adopted a girl, Danica, who also has the same condition. The whole world is filled with sympathy and admiration for Juliana, for getting such a severe case of TCS and still living her life well despite it.

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Juliana Wetmore pictures

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