Welcome all my friends and family. To get started, go up to the top right corner and click on sign in. There you can create a new user name and password so that you can join in on disscussions and respond to news. I hope you enjoy my site, lots of love, Connor :)
(click on above link)
Hi, My name is Connor. I was born in 2004 and when I was 3 months old, my parents found out I had Cystic Fibrosis (
CF). It is a lung disease that causes cronic lung infections that may shorten my life. I do 2 1/2 hours of treatments daily to help keep my healthy. I don't let CF get me down. I am a fighter and will live the best life I can. Go to cff.org to learn more about CF or look on bottom of this page for some info as well.
My Grandpa and Uncle got this website started for me when I was a baby for a way for family to stay informed about me. My mom hasn't done much on here for the last few years and I am now taking over :)
A little about me...I am 8 1/2 and about to finish 2nd grade with straight A's. I also am excited because I got in the 99%tile for GATE and will start that in the fall for 3rd grade. I have a little brother named Mason who is 7 years old and a new baby sister who is 6 months old. I love them even though Mason can bug me sometimes. My favorite thing to eat is Pancakes. I love anything to do with Space and can't read enough books about it. I am taking piano lessons and also play basketball. I started Scouts last year and I love it. I got baptized last November when I turned 8 and I love church. My family is
very important to me and I am very blessed!
(Click on the great strides picture above to see my latest Great Strides Walk Video to help fight CF)
Click below to hear Connor's song.
What is Cystic Fibrosis?
Cystic fibrosis (CF) is a genetic disease affecting approximately 30,000 children and adults in the United States. A defective gene causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food.
People with CF have a variety of symptoms including: very salty-tasting skin; persistent coughing, at times with phlegm; wheezing or shortness of breath; an excessive appetite but poor weight gain; and greasy, bulky stools. Symptoms vary from person to person due, in part, to the more than 1,000 mutations of the CF gene.
The treatment of CF depends upon the stage of the disease and the organs involved. Clearing mucus from the lungs is an important part of the daily CF treatment regimen. Chest physical therapy is a form of airway clearance done by vigorous clapping on the back and chest to dislodge the thick mucus from the lungs. Other types of treatments include TOBI® (tobramycin solution for inhalation), an aerosolized antibiotic used to treat lung infections; Pulmozyme®, a mucus-thinning drug shown to reduce the number of lung infections and improve lung function; and azithromycin, an antibiotic recently proven to be effective in people with CF whose lungs are chronically infected with the common Pseudomonas aeruginosa bacteria.
According to the CF Foundation's National Patient Registry, the median age of survival for a person with CF is in the mid 30s. As more advances have been made in the treatment of CF, the number of adults with CF has steadily grown. Today, nearly 40 percent of the CF population is age 18 and older. Adults, however, may experience additional health challenges including CF-related diabetes and osteoporosis. CF also can cause reproductive problems - more than 95 percent of men with CF are sterile. But, with new technologies, some are becoming fathers. Although many women with CF are able to conceive, limited lung function and other health factors may make it difficult to carry a child to term.
More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene. An individual must inherit two defective CF genes -- one from each parent -- to have CF. Each time two carriers conceive, there is a 25 percent chance that their child will have CF; a 50 percent chance that the child will be a carrier of the CF gene; and a 25 percent chance that the child will be a non-carrier.
For more information go to www.cff.org
"65 Roses" is what some children with cystic fibrosis (CF) call their
disease because the words are much easier for them to pronounce.
Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation
in 1965 after learning that her three little boys had CF. Her duty was
to call every civic club, social and service organization seeking
financial support for CF research. Mary's 4-year-old son, Richard,
listened closely to his mother as she made each call.
After several calls, Richard came into the room and told his Mom, "I
know what you are working for." Mary was dumbstruck because Richard did
not know what she was doing, nor did he know that he had cystic
fibrosis. With some trepidation, Mary asked, "What am I working for,
Richard?" He answered, "You are working for 65 Roses." Mary was
The Weiss brothers, Richard, 5; Arthur, 7 and
Anthony, 16 months.
He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages
to describe their disease. But, making it easier to say does not make
CF any easier to live with. The "65 Roses" story has captured the hearts
and emotions of all who have heard it. The rose, appropriately the
ancient symbol of love, has become a symbol of the Cystic Fibrosis
65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.