Conference

I went to a Ectodermal Dysplasia seminar in Iowa City on Friday. Probably wanting to know what the heck that is, Me and My daughter Emilee were born with it, its not very common but is affect few people, their is only 3 people in Burlington Iowa that has it, me, Emilee and another girl I have met. It affects your hair, teeth, skin and sweat glands. Anyways went to this seminar and learned alot even though I was only their for a few hours met some really interesting people. Emilee and I are not affected as bad as some of these people, some don't have hair, some don't have teeth at all. Some has so dry hands and scalp that they have sores on them. Me and Emilee are blessed and are not as bad as some of the people we saw on Friday. The next seminar will be next July and I sure am going to save up and try to go so I can learn more and be able to be their for all 3 days, the next one is in Virgina so that will be neat. I learned alot so I should be able to help Emilee out alot with some of her medical problems. Back when I found out we didn't know anything or how to get help they even help you get your insurance to pay for dentures, Emilee probably have to have dentures since she wont get all her teeth if you are ever interested to learn more you can go to www.nfed.org. Well it was the neatest seminar and while I was at the seminar they had a day camp for kids. To drop your child off you had to have your picture taken with her then you had to get a bracelet with the same number that she had and sign her in so when I went to pick her up they had to see the bracelet number and look up our pic so they new she was going with me and not someonelse which was so safe and nice to know that not anyone could pick her up. She got along with the kids and the weirdest thing was a few of them kind of looked like her or had features that reminded me of Emilee kind of weird but lots of fun and cant wait to go next year.