I realize that my daughter is atypical, but as Nancy Clegg has said, there's no way to know how many people are walking around with HPE. These kids, (and adults!) can accomplish many things, as we have learned from our daughter. They are all such individuals and so many of them have exceeded the expectations of the "experts." Our daughter was born in 1988. At birth we were told her head was a little small, but nothing to worry about. She started talking at 9 months, but everything else was a little delayed. She had some feeding problems, needed glasses at 18 months, knew the alphabet by 3, started reading at 4, and was very small. I was her teacher for the first four years, and by second grade I knew that something unusual was very wrong. She could learn skills but had trouble remembering things and very poor reading comprehension. She was tested in 3rd, 5th, and 8th grades, and variously diagnosed with "temperment," anxiety, or a visualizing problem. In high school she was tested again and found to be just fine. We hired a tutor, and spent hours with her every night on homework, reteaching algebra, etc. It felt a lot like child abuse. We finally consulted a geneticist, who was able to diagnose her sight unseen on the basis of her single upper incisor and lack of sense of smell. An MRI at age 17 confirmed mild lobar HPE. I read all the family stories on the web site and cried for days, even though they didn't sound like my daughter. Based on her MRI she finally got an IEP a couple of months ago, but she will be graduating from high school in six weeks, so it was too late to help. Teachers think there is nothing wrong, although her comprehension problems are even more severe now, and she does not understand science or social studies at all. She has mild craniofacial manifestations, but fortunately no health problems. However, she plays piano, shows cats and dogs in 4-H, has had a part in every high school play, and somehow is doing well in Spanish 2 with very little extra help. She has put in hundreds of volunteer hours working with a dog rescue group. Other kids at school just think she's very shy. I am angry that so many health and education professionals missed the diagnosis. But when she was born ultrasounds were not routine, and there was no web site for information. We would likely not have pushed her so hard or expected so much if we had known, and the schools would not either. Her neuropsychologist says she will never be able to live independently, so we are very worried about what will happen to her after we are gone. She thinks she can go to college next fall, but she lacks higher level thinking skills, judgement, academic skills, the ability to think on her feet, planning skills, the ability to find her way around, and a drivers licence, among many other things. It's a scary time for us. We wish every one of you the best of information and the best of luck.