65 Roses: Growing Awareness

Firstly, the term '65 Roses' stemmed from young children who have cystic fibrosis. The name was too difficult for them to say, and some thought their parents were saying 65 Roses. To this day, people still refer to cystic fibrosis as '65 Roses.'

My nephew, Nolan, is my inspiration for this page. He was diagnosed shortly after birth with Cystic Fibrosis. The shock and horror that comes with being told that will bring you to your knees. It's not something you want to hear about a precious child that's just been brought into everyone's life.

Nolan's first year was the hardest. At one point he stopped breathing and had to be rushed to the ER, followed by an extensive hospital stay at LeBonheur in Memphis, TN. The more we learned about the disease, the more we worried about Nolan and his well-being. There was no light at the end of the tunnel for us.

Since then, Nolan has been doing really well despite having cystic fibrosis. He still faces the many troubles of the disease: lung infections, weight loss, digestive issues. Everyone around him has been very proactive about keeping his health as close to 100% as we can. He has such an amazing support system behind him. I truly feel like we can keep him healthy until a cure finally comes along for this awful disease.

A little about cystic fibrosis: CF is an inherited chronic disease that affects the lungs and digestive systems of thousands of people. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

People with CF can have a variety of symptoms, including:

very salty-tasting skin;
persistent coughing, at times with phlegm;
frequent lung infections;
wheezing or shortness of breath;
poor growth/weight gain in spite of a good appetite; and
frequent greasy, bulky stools or difficulty in bowel movements.

There isn't a cure for it; however the Cystic Fibrosis Foundation has ongoing research and drug trials to change that. The CF Foundation isn't funded by the government, and 90 cents of each dollar raised goes directly towards these advancements. 

It takes an army to make a difference. With the help of our friends, our families… our communities… can can help find a cure for this disease. This is why I reach out to each and everyone of you.

Your ongoing support means the world to Nolan and the thousands of others who's suffer from cystic fibrosis.