Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Theresa - Not sure that it really answers the specific question that you asked but when we spoke to the geneticist, she gave us an article about this and it seems that the source for the repeat risk was different than the source that the Foundation lists in the manual (as I recall, the Foundation used it's own membership and thus included more children) but the risk was the same for both sources. I'm sure Meg can more clearly answer your question tho'. Good luck, Debbie From the keyboard of Troupe: > Hi everyone. > > We are still pondering having more children (we > have 3 and I would like a couple more) and get > lots of questions about recurrence. We tell the > people asking (concerned family) what the manual > says. But does anyone know how many families > are on the list and #'s such as how many kids in > family and how many of those are CHARGErs. We're > just curious about the " real " people out there > not just statistics. It's all a gamble whether > you have a healthy child or not anyway > " normally " , but obviously our odds are not as > great. > > I try to read tag lines of posts because I too > have a hard time keeping all the stories and > families straight. It is hard for me with no > face to put with the names, hopefully that will > improve after Cleveland. > > Thanks > > Theresa in Michigan -- we have Hannah 8, > 6, and 16 months our CHARGEr > -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Theresa - Not sure that it really answers the specific question that you asked but when we spoke to the geneticist, she gave us an article about this and it seems that the source for the repeat risk was different than the source that the Foundation lists in the manual (as I recall, the Foundation used it's own membership and thus included more children) but the risk was the same for both sources. I'm sure Meg can more clearly answer your question tho'. Good luck, Debbie From the keyboard of Troupe: > Hi everyone. > > We are still pondering having more children (we > have 3 and I would like a couple more) and get > lots of questions about recurrence. We tell the > people asking (concerned family) what the manual > says. But does anyone know how many families > are on the list and #'s such as how many kids in > family and how many of those are CHARGErs. We're > just curious about the " real " people out there > not just statistics. It's all a gamble whether > you have a healthy child or not anyway > " normally " , but obviously our odds are not as > great. > > I try to read tag lines of posts because I too > have a hard time keeping all the stories and > families straight. It is hard for me with no > face to put with the names, hopefully that will > improve after Cleveland. > > Thanks > > Theresa in Michigan -- we have Hannah 8, > 6, and 16 months our CHARGEr > -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Theresa - Not sure that it really answers the specific question that you asked but when we spoke to the geneticist, she gave us an article about this and it seems that the source for the repeat risk was different than the source that the Foundation lists in the manual (as I recall, the Foundation used it's own membership and thus included more children) but the risk was the same for both sources. I'm sure Meg can more clearly answer your question tho'. Good luck, Debbie From the keyboard of Troupe: > Hi everyone. > > We are still pondering having more children (we > have 3 and I would like a couple more) and get > lots of questions about recurrence. We tell the > people asking (concerned family) what the manual > says. But does anyone know how many families > are on the list and #'s such as how many kids in > family and how many of those are CHARGErs. We're > just curious about the " real " people out there > not just statistics. It's all a gamble whether > you have a healthy child or not anyway > " normally " , but obviously our odds are not as > great. > > I try to read tag lines of posts because I too > have a hard time keeping all the stories and > families straight. It is hard for me with no > face to put with the names, hopefully that will > improve after Cleveland. > > Thanks > > Theresa in Michigan -- we have Hannah 8, > 6, and 16 months our CHARGEr > -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Theresa, Where are you located in Michigan? I am in Flushing Michigan with a 19 year old CHARGE son. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Theresa, Where are you located in Michigan? I am in Flushing Michigan with a 19 year old CHARGE son. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Theresa, Where are you located in Michigan? I am in Flushing Michigan with a 19 year old CHARGE son. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Theresa, I have a daughter who goes to CMU in Mt Pleasant. She love Grand Rapids. Keep in touch if you would like. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Theresa, I have a daughter who goes to CMU in Mt Pleasant. She love Grand Rapids. Keep in touch if you would like. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Theresa, I have a daughter who goes to CMU in Mt Pleasant. She love Grand Rapids. Keep in touch if you would like. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 We are in dale. 15 minutes from between Grand Rapids and Lake Michigan Theresa KAV427@... wrote: > Theresa, > Where are you located in > Michigan? I am in Flushing Michigan > with a 19 year old CHARGE son. > > > > [Non-text portions of this message have been > removed] > > > Membership of this email support groups does > not constitute membership in the CHARGE > Syndrome Foundation. > 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 > 6th International CHARGE Syndrome Conference, > Cleveland, Ohio, > July 25-27, 2003. Information will be > available at our website > www.chargesyndrome.org or by calling > 1-. > > > Quote Link to comment Share on other sites More sharing options...
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