HI SO I never updated since the NIH...the trip was in Dec 09 and we havent heard anything concrete yet. They did alot of new tests and are still testing her blood and what not. They thought she might have a gene for Lafora Disease (sometimes called Lafora bodie disease I think) But its not for sure and we havent heard since June. So we are waiting to hear from them some more. Kylie was on Cnn's Anderson Cooper (dr. detectives) the main story is about the NIH but they showed quite a bit of Kylie so if your interested you can go to CNN.com and under the health tab search Kylie McPeak and it should show her video. I dont know if anyone else has contacted the NIH your Dr can refer you but they were very straight forward and seemed to care about Kylie alot so if your able to look into going I would surley recommend it!! 
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