Condition: Vator Syndrome
City, State: OR
Club: Highland Elementary School Sparrow Club Service Hours: 706
Date Adopted: 11/22/2011
Dylan's Story:(11.28.11) Dylan is a beautiful and bright 2-year old little girl. She loves to play with her mom, Ali, and enjoys looking at books and pictures and learning and experiencing new things everyday. When Ali was five months pregnant, doctors were concerned about her size. She was bigger then she should have been for a woman at that point in her pregnancy so they decided to do an ultrasound. They found that Dylan had large ventricles and a lack of brain tissue. She was missing a kidney. Doctors couldn't see her stomach and didn't know why. Dylan was finally born about 7 weeks early. She was breathing on her own but doctors soon discovered her problems. She had an esophageal atresia that had left her with a 7 cm gap between her esophagus and her stomach. They also discovered that she had what is known as a midline disorder, which affected her brain, esophagus, stomach, kidney, parts of her bladder, and colon. Dylan spent the first 4 months of her life in the NICU. She had a feeding tube placed, a shunt to drain fluid from her brain, an ostomy bag placed, and the gap between her stomach and esophagus repaired. At 8 months of age, she had cranial reconstruction to reform her skull, eye socket and cheekbone and help to keep her face from being deformed. Doctors have no idea what the future holds for Dylan. She has been officially diagnosed with Vater Syndrome and Hydrocephalus caused by Spina Bifida. At one point, doctors doubted that Dylan would ever see, talk, or feed herself but she continues to prove them wrong. With the help of speech, occupational and physical therapy, Dylan is learning to walk. She can speak and communicate clearly and has special glasses to help her to see. She still needs the feeding tube but is slowing learning how to eat and feed herself. Sparrow Cash raised for Dylan will help to pay for ongoing medical expenses, therapy and everyday living expenses for the family.