I have a son who is 13 years old. Robbie is in the 7th grade but is doing high school geometry. At birth Robbie was diagnosed with Apert's but by age 2 the diagnosis was changed to Pfeiffer's. Robbie was born with an imperforated anus so he needed a temporary colostomy for a year. He became hydrocephalic after the first surgery at 4 months. He has had a total of 20 surgeries the first 5 years of life. He attends the local middle school most of the kids at school know Robbie because of his math abililties and not because he looks somewhat different from his classmates he is small for his age. Robbie attends a retreat every year for craniofacial children and their parents through the Children's Craniofacial Association in Dallas, Texas.
Thank you for contacting me. I hope I can help other people who have family members with Pfeiffer's and other craniofacial problems
Sharon Cavanagh Allbright
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