Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 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! Quote Link to comment Share on other sites More sharing options...
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 Dear Rosemary, I think n still keeps in touch with some of the family--that are left. It sure did seem incredible to me as well. how hard for them to care for so many at one home. I hope this finds yours doing good, better, best now. LOVE & HUGS, grandmomBEV Re: 9 with CF 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Dear Rosemary, I think n still keeps in touch with some of the family--that are left. It sure did seem incredible to me as well. how hard for them to care for so many at one home. I hope this finds yours doing good, better, best now. LOVE & HUGS, grandmomBEV Re: 9 with CF 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! 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 10:35:04 PM Eastern Standard Time, Mcesana writes: > This is so hard; ignorance indeed is not bliss; it is a prescription for > tragedy! > What a wonderful line. I may have made a joke but truly knew that they did NOT know it was CF. I was not the least bit surprised they were Irish. My grandmother is from Ireland - youngest of 13 and it the percentage of carriers is quite high there.... I am the best, living, breathing example of ignorance and falling victim to our medication system. Having 3 kids with CF diagnosed at all diagnosed in 1996/97. If I only knew then what I knew now. I hope that parent who aren't certain of a diagnosis can learn from the wisdom of us " old Timers " . She said, with love and humility......although I would still buy him a condom! It never hurts to be safe! And even if none of their kids hade CF just having 9 kids she deserves a drink. Having 9 kids with CF - is like having 27 kids!!!!!!!!!!!!!!!!!!!!!! God Bless them and they are still MARRIED - will the wonders never cease! 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! 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 10:35:04 PM Eastern Standard Time, Mcesana writes: > This is so hard; ignorance indeed is not bliss; it is a prescription for > tragedy! > What a wonderful line. I may have made a joke but truly knew that they did NOT know it was CF. I was not the least bit surprised they were Irish. My grandmother is from Ireland - youngest of 13 and it the percentage of carriers is quite high there.... I am the best, living, breathing example of ignorance and falling victim to our medication system. Having 3 kids with CF diagnosed at all diagnosed in 1996/97. If I only knew then what I knew now. I hope that parent who aren't certain of a diagnosis can learn from the wisdom of us " old Timers " . She said, with love and humility......although I would still buy him a condom! It never hurts to be safe! And even if none of their kids hade CF just having 9 kids she deserves a drink. Having 9 kids with CF - is like having 27 kids!!!!!!!!!!!!!!!!!!!!!! God Bless them and they are still MARRIED - will the wonders never cease! 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! Quote Link to comment Share on other sites More sharing options...
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