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Post by Amy Lombardi on Apr 24, 2009 15:35:23 GMT -5
Subject: Teaching others about Battens Posted by: Darlene Royalty Feb 27th, 2009 - 4:35 PM Today (2/27) I did an in-service for the School for the Visually Impaired in Jacksonville, IL They called because they have a student there, (where my girls all went) that has Battens. I was nervous but I feel I did a great job of instructing the staff about Battens. I think it is a good thing to help people understand our kids and this thing that is taking them away. Knowledge is power. I just wanted to share. Thanks Darlene Glenda Flatt Mar 1st, 2009 - 5:31 PM Darlene, I think it's wonderful that you did an in-service at the school. When Nick was younger, we spoke to a class at college. The students were really eager to learn more, and I agree that it's very important that we get the info out there. Glenda Flatt Somerset, KY Nikki Vigil Mar 9th, 2009 - 4:42 AM I agree. It's so important that we teach anyone we can about this disease. You never know when you will have the opportunity to educate someone. Last summer our daughter was involved in a near drowning accident (on top of everything else we deal with . The pulmonologist at the PICU called in his med students on a Sunday, not only to learn about Batten Disease, since they may never see another case, but also to hear our story. He felt there was a lesson to be learned that you should always listen to the parents. We told our neurologist for a year that something other than epilepsy was going on, that a kid shouldn't be falling like that. He told us "all three year olds fall". I hope that those med students will carry that lesson with them.
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