Guest guest Posted November 9, 2000 Report Share Posted November 9, 2000 Cheryl, I thought that was an issue that only drove ME nuts. My insurance will pay for a hearing aid if you have had a surgery and have lost hearing as a result of an event, not if you were born with a hearing loss. Same with therapies as well!!!! Debbie Matasker mom to 3 w/CHARGE, 6, andra 15 mths re: no reply And why do some insurance companies pay for therapies for people who became imperfect but not for thoses who were born imperfect (yes, speaking from personal experience)? Cheryl, , (7), (5, CHaRGE) MI >>> west@... 11/09/00 03:45PM >>> Tim- The way you said it helped in my thinking. I agree that it will be ideal if Aubrie can make that decision for herself. I also find it chilling to think of that British doctor and others who would prohibit the birth of children with disabilities. I can't imagine Aubrie not being here, or someone thinking that she has no right to be. It sickens me. A friend and I were talking about this yesterday. She was at a deaf conference and heard a discussion of the location of the gene that indicates deafness and that people in Europe are already aborting fetuses that have that gene. I'm not sure of the validity of the story, but just the thought that it's possible is enough to sadden me. As you said, where will we draw the line? If my " perfect " son, , got in a debilitating car accident, would someone want me to kill him? When I am elderly and lose some of my skills, will someone want to kill me? It's a terrifying thought. But isn't that the same as what we would be doing to unborn babies? It's as if you have to be born perfect -- then you have the right to continue to live even if you become imperfect along the way. In fact, some people who become imperfect are held on a pedestal (for ex, Reeves). How is he so special but a child born that way might not be allowed to live? Michele Aubrie's mom " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) 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...
Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 lisa, What kind of md should kriste take Josh to? another ped or geneticist? with this city being so big, there are so little info re:charge. I'm a nurse and have never heard of it; the same for the nicu nurses where josh was at birth. in fact, the nurse and i thought the nicu md said " chance " association. couldn't find that anywhere. in fact, charge is not in my medical dictionary nor medical books. when josh goes into the hospital, the residents and interns have never heard of it and have a two page document out of their medical books. when i give them a copy of the charge association info pages, they are so suprised to see the info. i work with precerting insurance in the hospital and authorizing with the insurance certain procedures. when josh had to have his fundo, the anesthesia md would not do it because the insurance that my daughter has had not paid them for 3mos.(other cases). i took it upon my self to fight and got the media involved. once the story was aired on a thursday night, josh had his surgery on friday morning. it has been a fight to get any tests completed. it took two months to get the ct head/ears done for check his ears. i know it will be a uphill fight for 2nd opinion. iris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 Iris, I think she needs a 2nd opinion, especially with him having the atresia and the other characteristics! Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: Re: no reply LISA, KRISTE IS 28 YRS OLD. LIKE I SAID, SHE WAS NEVER DX AS CHARGE. JOSH'S GENETICIST WILL NOT LABEL HIM AS A CHARGER, BUT HE HAS 4 OF THE MAIN CHARACTERISTICS PLUS SOME OF THE EXTRAS!IRIS "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)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...
Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 Iris, I would definitely say a geneticist should see him. There is medical literature out there about CHARGE for sure, the foundation has a bibliography available. The CHARGE manual from the foundation is probably the best info as far as I've read. Most up to date, covers it all in one book, etc. Tell Kriste not to give up, it certainly sounds like CHARGE to us, and he should be receiving the appropriate care/interventions/surgeries/tests that he needs without a big fight or TV appearance in order to receive them. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: Re: no reply lisa, What kind of md should kriste take Josh to? another ped or geneticist? with this city being so big, there are so little info re:charge. I'm a nurse and have never heard of it; the same for the nicu nurses where josh was at birth. in fact, the nurse and i thought the nicu md said "chance" association. couldn't find that anywhere. in fact, charge is not in my medical dictionary nor medical books. when josh goes into the hospital, the residents and interns have never heard of it and have a two page document out of their medical books. when i give them a copy of the charge association info pages, they are so suprised to see the info. i work with precerting insurance in the hospital and authorizing with the insurance certain procedures. when josh had to have his fundo, the anesthesia md would not do it because the insurance that my daughter has had not paid them for 3mos.(other cases). i took it upon my self to fight and got the media involved. once the story was aired on a thursday night, josh had his surgery on friday morning. it has been a fight to get any tests completed. it took two months to get the ct head/ears done for check his ears. i know it will be a uphill fight for 2nd opinion.iris "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)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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