Guest guest Posted July 13, 2000 Report Share Posted July 13, 2000 Hi , I am sorry that your son has been discriminated against due to his diagnosis. I have heard of it happening once to the friend of a friend who had a child with Down's Syndrome and she had a fight on her hands to get Doctors to operate and repair the child's heart. I was also going to say that it had never happened to Larry but in thinking about it maybe he has, I had to get Larry diagnosed with ADHD to get some help with his severe behaviour problems. I was not able to get the help WE needed, the presumption was that as he is disabled you just had to put up with it, if a so called normal child had the same problems it would have been much easier to get help. What is the prognosis for ? From what you have written about him on line and on your web site it looks like you have both been through so much and he has obviously come so far. Do you know why he has done so well ? Is it because of your persistence or is it just because he is one of the lucky ones ? Wishing you the best of luck with . Jan Hewitson, Mum to Larry chaRgE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 ----- Original Message ----- From: Jan Hewitson >>What is the prognosis for ? has already outlived his original "medical" prognosis by 6 years - he shouldn't have lived more than a few weeks after birth...... The revised prognosis is now "well into adulthood" provided he gets the medical and supervisary care that he needs. That makes me feel a lot better these days. From what you have written about him on line and on your web site it looks like you have both been through so much and he has obviously come so far. Do you know why he has done so well ? Is it because of your persistence or is it just because he is one of the lucky ones ? He has been through so much, but the answer to why is simple - love, faith, prayer, ignorance (we forgot to tell him he wasn't supposed to make it) and one terrific pediatrician who was/is willing to put it all on the line for a child everyone else wanted to give up on.......... Take Care and Keep Looking for Rainbows!!!, mum to (5, T-18 mosaic)ICQ: 4723851AOL: Rainbowkazhttp://homepages.tig.com.au/~karenshttp://www.trisomyonline.orghttp://www.challengenet.com/~soft/index.htm Wishing you the best of luck with . Jan Hewitson, Mum to Larry chaRgEFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
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