Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Well, they did NOT know that it was hereditary and they are now in their early seventies and now they DO know that they are both carriers! That is in part the price that people pay when their medical care " system " has, in the past, failed to inform them. After all, they had all their kids before testing was even thought of, and truly, had NO notion that this could be hereditary, AND each kid was diagnosed late enough that they did not even know that the last five had it until it was too late! That is why I believe in educating parents, young people, married cou ples. For example, I am Spanish Jewish. We all know that Ashkenazi Jewish parents should be screened for Tay-Sachs disease which is usually le thal in a child by about six years of age. But very few of us know that all Jews should be screened for Canavan's disease, which is less com mon, but carries a similar lethality rate. I had never heard of it until last year! I do not think it is a good thing to blame parents for a tragedy of which they could have had no foreknowledge. I do think that it is really good to educate ALL, as cystic fibrosis is far more common amongst many groups than most of us could ever imagine as so few survive due to lack of medical care, undertreatment and UNDERDIAGNOSIS. That is why we encourage parents who are trying to find out whether a child has cf, and do not yet know, to remain on this list; we welcome them and support them, because we try never to condemn, but to support the parents, adults and family members. n Rojas, who brought this topic up so that we might think about how many have no way of knowing what, even after they have had se veral ill children, the actual cause might be. And heaven forfend that they be a minority THOUGHT not to be at risk for cystic fibrosis, when in fact there is some risk, to ALL of us; That Human Genome Project applies to genes found in many of us. This is so hard; ignorance indeed is not bliss; it is a prescription for tragedy! Love to all at cfparents, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 In a message dated 12/2/2002 9:08:53 PM Central Standard Time, ROSEMARY3FOR3wCF@... writes: > > If anyone has anymore information on this amazing, incredible family please > > feel free to share it. I am sitting here with my mouth hanging open. I > would like to buy that mother a stiff drink and a condom. > > > > Rosemary in New York with 3 children with CF - they are 12, 10, 6...I > coined > the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready > for > this - TOBI after their medication! I think I need a diaper on this one Rosemary I just wet my pants laughing so hard!! LOL Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 In a message dated 12/2/2002 9:08:53 PM Central Standard Time, ROSEMARY3FOR3wCF@... writes: > > If anyone has anymore information on this amazing, incredible family please > > feel free to share it. I am sitting here with my mouth hanging open. I > would like to buy that mother a stiff drink and a condom. > > > > Rosemary in New York with 3 children with CF - they are 12, 10, 6...I > coined > the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready > for > this - TOBI after their medication! I think I need a diaper on this one Rosemary I just wet my pants laughing so hard!! LOL Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Rosemary , Thank you for another great smile. I will keep it & think on that every day. I also think it should be the stiff drink. I will also keep her way up there on the prayer chain .she is really needing that too :):), PLUS, a case of whatever she drinks!!! hahahehe LOVE & HUGS, GRDMBEV Re: 9 with CF In a message dated 12/2/2002 9:08:53 PM Central Standard Time, ROSEMARY3FOR3wCF@... writes: > > If anyone has anymore information on this amazing, incredible family > please > > feel free to share it. I am sitting here with my mouth hanging open. I > would like to buy that mother a stiff drink and a condom. > > > > Rosemary in New York with 3 children with CF - they are 12, 10, 6...I > coined > the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready > for > this - TOBI after their medication! I think I need a diaper on this one Rosemary I just wet my pants laughing so hard!! LOL Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Rosemary , Thank you for another great smile. I will keep it & think on that every day. I also think it should be the stiff drink. I will also keep her way up there on the prayer chain .she is really needing that too :):), PLUS, a case of whatever she drinks!!! hahahehe LOVE & HUGS, GRDMBEV Re: 9 with CF In a message dated 12/2/2002 9:08:53 PM Central Standard Time, ROSEMARY3FOR3wCF@... writes: > > If anyone has anymore information on this amazing, incredible family > please > > feel free to share it. I am sitting here with my mouth hanging open. I > would like to buy that mother a stiff drink and a condom. > > > > Rosemary in New York with 3 children with CF - they are 12, 10, 6...I > coined > the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready > for > this - TOBI after their medication! I think I need a diaper on this one Rosemary I just wet my pants laughing so hard!! LOL Deb A Quote Link to comment Share on other sites More sharing options...
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