I am a grandmother whose 5 month old grandson died because the doctors had no idea what his illness was.  They tried everything possible to cure him but to no avail.. Two years later another grandson was born and became ill also.   One doctor thankfully recognized that he too must have the same illness as the previous baby and immediately sent him to Duke for a bone marrow transplant.  This baby was saved.  If testing had been available the first baby could have been saved and the second one could have been diagnosed much sooner.   Please pass the necessary legislation to test for this disease.  ype over this text and enter your comments here. You are limited to approximately 3000 words.