Wednesday, September 16, 2009

Born without a Face

Julianna Wetmore was born with a rare genetic craniofacial disorder known as Treacher Collins Syndrome. This condition normally appears as elongated or sagging eyes and small or missing ears and generally affects 1 in 10,000. Not only is this a rare occurrence but, Julianna has perhaps the most severe case ever seen. The condition was first seen during pre-natal scans where doctors thought that she had a cleft palate. However, the full extent of her disfigurement was not seen until she was born.



When she was born

Treacher Collins Syndrome is a genetic mutation that prevents the proper formation of the skull, cheek and jaw bones. Julianna's case was so severe she required immediate plastic surgery to uncover her left eye and to open up an airway so that she could breathe. Dr. Teng a neonatal physician at Shands Jacksonville Medical Centre described Julianna as the worst case he has experienced in his life. Nancy DeBiase a nurse on the ward with Julianna requested a cat scan to check if there was a fully-formed brain inside this mis-shapen skull and was delighted and amazed to discover that there was. Dr S. Anthony Wolfe, Chief of plastic and reconstructive surgery explained that Julianna's case was due to the presence of the Treacher Collins gene plus another aberrant gene which amplified the effect. These genes affected the embryonic development at an early, probably intra-utero, stage.



When she was 2 years old

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.



When she was 3 years old

Part of the greater goal is for Juliana to be accepted into society. Thom and Tami have never hidden Juliana away, but if she is ever to be fully accepted into her community, it is crucial that she is accepted by other children. But, the schoolyard can be a cruel place. Tami takes Juliana to a Mother's Day Tea at Kendra's school. Tami hopes that by exposing her to other children, gradually, now; she will have an easier time in adapting when it's her turn to go it alone. The Jacksonville community have been a huge support for the Wetmore family with regular fund-raising events for Juliana's charity. The Annual Chrome Divas motorcycle rally has raised thousands of dollars. The Jacksonville chapter in one of thirty five in the country. It must not be forgotten that, despite the disfigurement, Julianna is a bright, happy and healthy little girl.

3 comments:

Marycruz Lopez Hurtado said...

poor girl

Tisha said...

She's a very strong little girl! All the best sunshine!

Jasmine said...

:( I am so so sorry, that she has to live with that. However I imagine her willpower, and quality of life is far better than most of us. I typically am not religious but I found myself saying a prayer that society will not show her their cruleness.