Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 , As far as we know is the only person in the world with his particular surf1 mutation. The only reason that they did test on his dad, me and his brother was because the doctor reading test was interested in this as part of his research project. They had originally done the test on him and a about a year later asked us if we were interested in helping his project. The doctors were not interested in testing us at all before that. We have actually had doctors tell us we don't want to be tested before they complete the laws to protect from that knowledge (pre-existing condition, etc.) I do know that we told them we would pay for testing our other son even if the insurance would not but they said if he didn't have sypmtoms they would order the test. He does not have either of the bad genes (horay!!!!!) but it was still a worry for that year. I think part of why they don't want to do the tests is because there is no cure even if you know. Once they have a dx then the doctors don't go looking for the reason for your ill. They just assume it is due to the other. Don't know if this is helpful. Twana > Is it rare for a child to inherit from both parents? How did you > get the testing? > Thanks, > Quote Link to comment Share on other sites More sharing options...
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