Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Kris, Billy's dx is also a surf1 defect. The papers we have read on this dx have the kids being terminal at 2-4 years of age. If you have the extra years be so glad! Billy is old for a surf 1 kid. He is 11. I agree that the first time you hear that your child has a limited number of years you do feel that the doctor punched you. Even after you have heard it more than once it is still a punch! As for the bluntness, in some ways you want to know so that you won't be making the plans for college someday and instead can make plans for Disney World this year. You may find yourself trying for more enjoyment now. I feel bad for you. Twana > BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will most likely take her from us between the ages of 5 and 8. Needless to say this was like a punch in the stomach...he said her believes her issues to be in the " SURF01 " chain. Because of the difference in her MRI's between 9/03 and 9/04 he feels she will likely regress with more brain lesions and " probably " respritory issues. I liked Dr. Shoffner, but he is very blunt. What do you all think? Quote Link to comment Share on other sites More sharing options...
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