Jessica - posted on 06/14/2009 ( 1 mom has responded )
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Hey everyone! Im Jessica, 22 from Tn. My little man is Karson and is 4 months old and has severe hemophilia A. It wasnt in my family so its considered a genetic mutation. My husband and i have been trying to read about hemophilia to educate ourselves on years to come. However, textbook material never matches real life experiences! If any of you have any advice, information, or just stories Id love to hear from you!!! :)
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Kimberly - posted on 06/16/2009
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My son RIley has severe hemophilia A and it did not run in my family! Riley is 2 now and he is wild and crazy, when he was 1 1/2 we got a port placed in his chest and he gets his factor every other day me and my husban give him his factor and I love not having to depend on anybody! Riley bruses like a normal child no more soft tissues bleeds and i do not worry about him any more! Before the port we would have to hold him down for a long time and sometimes he would not even get his factor! Things are good aznd the factor works great for riley, but when he was Karson age riley would wear knee pads and elbow pads we used sweat bands b/c he was so little! We padded everything and he had soft toys! Things are so much differnet now! If you have any questions just ask!
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