Our daughter Briley is a 4 year old little girl who is full of life and affection. However, her journey has been filled with many obstacles. When Briley was born she experienced nasal regurgitation, failure to thrive, and aspiration of fluids. She had to undergo surgery at two months old to insert a feeding tube, had hitial herna repair, and Nissen fundoplication. However, she had to encounter many hosptial stays after this without any medical diagnosis.As the months passed she was experiencing developmental delays,therefore; she had to receive physical,occupational,and speech therapies. During this time, I knew that something wasn't right and kept pressing the doctors for reasons why? At this point, there was still no diagnosis for her medical state. With so many unanswered questions,countless testing, and several hosptial stays later we finally met Dr. Mark Ray ENT @ East Tennessee Children's Hosptial with some answers in March 2009. Dr. Ray administered one simple blood test called FISH, and discovered she has Velocardiofacial Syndrome.While many families may have found this to be disheartening news, it was a blessing to us. Because after two long years we were now able to get the medical specialists she needed in order to grow and lead a normal life. In seeing the specialists, we have now learned she has heart defects, mild hearing loss, and later will probably need surgery to fix her palate. Even though she has faced all these trials, our daughter is a cheerful, playful little girl who floods our hearts with happiness. Starting the support group Little Faces, Big Hearts I felt it would give her more support and love from others who experience the same challenges and also, bring awareness to the disorder to help other children from being misdiagnosed and undiagnosed.
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