“Girl Born Without A Face,” we were extremely touched and curious about her medical progress. And now, Juliana Wetmore, 8, who suffers from a severe case of Treacher Collins Syndrome — an hereditary disease that causes defects of the face — has some good hope for her future.
Although Juliana has been through countless numbers of surgeries, since she was born in March of 2003 missing 30-40% of the bones in her face, she recently underwent a “big deal” surgery in February that involved doctors taking rib bone and beginning to form cheek bones with it.
“It wasn’t easy for her, as her face swelled to the extent that she couldn’t open her eyes,” her nurse, Jeanne, wrote on Juliana’s webiste. “Even so, she didn’t want to lay around in a hospital bed, so she was home on her third post-op day.”As Julianna has no ears she needed to be fitted with a bone conduction hearing aid. She began therapy with Judy Hammer-Knisely a Paediatric Speech and Language Pathologist at the Wolfson Children's Hospital in Miami.
As her mouth is not properly formed she cannot speak so the therapy involved teaching her some basic sign language. Also, the malformed mouth prevents her from eating, so Julianna has to be fed through a pipe into her stomach.By the time Julianna was two years old she has had two major operations and many other surgeries.
Her mother Tami and father Thom Wetmore, a flight engineer with the US Navy, have been at her side almost constantly. Fortunately the US Navy benefits scheme has picked up the tab, so far, for Julianna's treatment. An estimated $3,000,000.
As she grows there is an ever present danger that holes will open up in her skull. A fact that has already required bone grafts, including one where a section of one of her ribs was removed, split and used to graft into a hole in her skull and to aid rebuilding of her nose.
Julianna will need continuous surgery for many years to complete the rebuilding of her face.And although the surgery didn’t change Juliana’s appearance much, it is the first step in the process to give her cheekbones.
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