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A Spirit Of Courage And Hope: Defying The Odds

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Referred to medically as Oculo-Auriculo-Vertebral Syndrome (OAV syndrome), Goldenhar syndrome is a congenital defect that is denoted by an incomplete formation of the nose, ear, lip, soft palate and mandible. Approximately 1 in 3,500 to 1 in 26,000 births are affected by the condition in the UK.
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The Origin of the Term

The eponymous condition was first documented in 1952 by Dr. Maurice Goldenhar. Dr. Goldenhar was a general practitioner and ophthalmologist who emigrated in 1940 from Belgium to the U.S. He returned to Belgium to study medicine before returning again to the U.S.

A Little Bit about the Condition

The major markers of Goldenhar syndrome include incomplete formation of the ear, soft palate, nose, mandible and lip, typically on only one side of the body. Some patients may exhibit growing issues that are related to such internal organs as the lungs, heart or kidneys. In these cases, the organ is either underdeveloped or is not present on one side of the body. Bilateral defects may also occur, although these events are usually less frequent and occur among 10% of the GS population. The cause for Goldenhar syndrome is, at this date, chiefly unknown.
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One Goldenhar Miracle

According to one news report, one 14-year-old boy, Austin Niehus has defied the odds as he himself has Goldenhar syndrome and has managed to survive the condition, despite having undergone 52 corrective procedures already. At this time, Austin is waiting to undergo his 53rd surgery. The procedure has been scheduled to fix Austin’s open palate.

How an Open Palate Develops

An open palate or cleft palate occurs during the formation of the mouth during the sixth through ninth weeks of pregnancy. Therefore, a cleft palate develops when the tissues that make up the roof of the mouth do not fully join together during pregnancy. The back and front palate is open in some cases while only part of the palate is open in other instances.

Raising Funds for Surgery

Austin Neihus is both unique and special as doctors told Austin’s mother that he would not survive past his first birthday. Now, after enduring 14 years of corrective procedures, he is ready to face his next surgery. However, the procedure is not covered by insurance. Therefore, Austin has made a video that is meant to raise funds for the proposed procedure. Austin’s surgery, which has been slated for June 2015, will cost $4,000.

Staying Positive

Because Austin’s mother is a single mother of three children, he hopes to spark enough motivation in contributors to help out in the financing his upcoming surgery. Besides going through the procedures, Austin has also endured teasing and bullying by his peers – all which goes to show that, despite the odds, a positive spirit inspires hope and confidence in spite of life’s negative events.

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