its me again we just found out that chantzs little sister cpk level is high chantzs was at 3000 and now his sisters is at 4000 so now we have to take her to the md clinic to see what she has. i cant belive this is happaing to us they are my babies and now i am not sure how to look at things .

It is the dystroglycan and they have to do more blood work to try to break down the alpha straind or something they still cant tell me anything Dr. lenholm told me this is the first case like this in the united states there has only been a 3 other cases 1 in japan and 2 in turkey. this whole thing is unbeliveable

Hi just scanning through the members and looking for people in my area hoping that there is strength in numbers. My son was diagnosed in Sept 07 and turns 2 on 8/7 Although I am new if we can share the kn owledge that we have learned in the short time please contact me.