Cystic Fibrosis (CF) is a genetic disease affecting mostly Caucasians, although it has passed into other ethnic populations as well.  The rose as well as the term "sixty five roses" has come to symbolize CF because of the story of a young child attempting pronunciation of this affliction with which he was born.  The closest that he could come to saying "cystic fibrosis" was "sixty five roses" and the childlike statement of this has stayed with all that come in contact with it, especially since the disease affects so many children.
    Researchers believe that roughly 1 in 20 Caucasians (especially those of Northern European and British Isles extraction) carry the gene for it.  It is recessive, so when a child is born with it, both parents had to carry it (usually anyway ... unless there is a spontaneous mutation ... or unless there is something that they haven't figured out about it yet in their research ... which is also very possible).  People really did not know what it was until roughly the 1930's because the children born with it usually died within months.  It's only been since the late 1980's that the gene was actually located.  Basically, 2 people carrying it have a 1 in 4 chance of having a child with CF each time a child is conceived.
    My oldest son, Logan, does not have it and does not carry the gene.  My middle son, Keegan, has CF, which means he received the gene from both his father, Mark, and from me.  My youngest daughter, Kara, does not have CF but does carry the gene.  We did not know in advance that we carried it because there had never been CF in our families to anyone's knowledge (and grandparents couldn't remember any unexplained infant deaths).  Also, they couldn't have tested for the gene anyway when we first began having children.  I have always been very healthy, so I assumed (WRONG WRONG WRONG) that my kids would be too.
    Researchers believe that it is a problem with the way the cells in the body transfer salt but there is probably more to it than just that, from what current research indicates.  However, basically, too much salt is excreted from the body, making the body lose too much of it.  This, in turn, makes the fluids in the body very, very thick and sticky, and thus very, very difficult for CF sufferers to excrete.  It clogs the lungs, scarring them and making them very prone to infection and pneumonia.  It also clogs the digestive tract of most of them, making it difficult to digest food properly and to absorb necessary nutrition.  Most of the males that have it are sterile in adulthood, because it clogs their vas deferens, etc, making it difficult to conceive.  Many women have the same challenge, although more women can conceive with CF than men can.  CF sufferers are prone to pancreatic difficulty and sinus problems.
    There is a lot that they can do for it now, but as yet, there is no cure.  They are working on a variety of control medicines for it as well as many possibilities for significant relief (zithromax, DHA - fatty acids, etc) but as yet, nothing totally stops the decline in health.
    The average age is currently 32 (18 when Keegan was born, so it has improved greatly).  Many of those with CF live well into early adulthood and beyond.  Current diagnosis techniques have made it so that many older patients are being diagnosed that have had milder cases and were not detected earlier in life.  Previously it was done strictly by measuring salt in the sweat.  Now there are also genetic tests for the variety of mutations that make up the CF gene.
     Keegan, however, will be 16 in February (Leap Day, no less) and has significant lung involvement (damage) and is on the more ill side of the bell curve.  He shows the "traditional" decline of a child with CF.  He is currently in the number 1 position for his size and blood type for a lung transplant at Stanford University Hospital in Palo Alto, California, and I therefore strongly urge organ donation by all.  He gets a lot of antibiotics, asthma medicines, and lung inhalers as he awaits his transplant.
     Regarding transplant, I do not wish disaster to fall on anyone, but I also know that statistically accidents do happen.  Therefore, I encourage those that are faced with that decision to realize that their selfless gift of organ donation from themselves or from a loved one can save up to 7 other people.
     Thank you for your time.