CYSTIC FIBROSIS: MOTHER KNOWS VALUE OF MENTAL OUTLOOK

     Most participants struggled through at least one of the six events of Saturday’s Cystic Fibrosis Corporate Games at John Burroughs School.  But in view of some of the barriers she has had to overcome in the past two decades, not even the obstacle course could be considered overly challenging for Deluxe Printers’ employee Alice Bacon.

     The west county woman not only has a 20-year-old son with cystic fibrosis, but she also gave birth to a second son who died of that affliction at the age of six months.

     “I was pretty uneducated as far as the disease was concerned, so it wasn’t a shock or devastating situation at first,” Bacon recalled.  “I didn’t even learn that my son Charlie had the disease until I visited with the doctors and had him tested after my first son (Stephen) died.”

     Bacon has learned a great deal since that time.  In addition to becoming familiar with postular drainage (where the chest is continually pounded on to help clear the lungs) and other medical treatments, Bacon is more aware of the role played by exercise and a high protein and high carbohydrate diet.

     But as important as the physical aspects are in attempts to keep the disease in check, Bacon believes that the mental outlook is equally significant.

     “It takes a total positive attitude from the whole family,” Bacon said.  “I’ve seen kids close to my son’s age who have abused themselves and given up.  You either accept it (cystic fibrosis) or don’t accept it.

   “A lot of it is how the child is diagnosed.  You have to look at CF as a normal part of life.  It doesn’t mean that your child will have a full life, but it usually helps if he continues to do therapy and you push him to the ultimate limits.  My attitude and my husband’s (Charles, Sr.) made the difference to where my son is today.”

     The Bacons have every reason to be proud of their son.  He just completed his sophomore year as a business major at Northeast Missouri State University.  In addition to performing all his necessary medical functions, Charlie runs every day and plays tennis in warm weather.

     The basic knowledge of both physical and mental health is probably more important to CF patients than to the general public.  But even if all the considerations are followed slavishly, there are still no guarantees of long life.  Few CF victims live past their 20’s.  That’s just one item in which Bacon believes the general public must become educated.

     “People shouldn’t be afraid to ask questions about CF,” Bacon said.  “We’re not going to hide in the closet.  We’re very willing to let people know about the disease so they can be educated.

     “It’s important that people are educated about all these things so they’re treated like normal human beings and not just people to feel sorry for.  Some certainly can’t do what my son is capable of, but almost all are capable of making something of themselves.”