The little beauty on top left corner of my blog is Skye and she has cystic fibrosis; as well as a long list of other medical conditions. The picture below her's is of Conner Jones and his siblings. After finding the heartbreaking blog, "Not So Bright and Shiny", about Conner Jones, a little boy from my hometown suffering with CF, I was on a mission. It was truly Conner's story that opened my eyes and broke my heart to the horrors of CF. The idea of a child fighting for their life hit me hard, especially after just becoming a Mother myself. The story began about a year ago, after finding myself on the computer, praying for some sleep after being woke up by my infant son. I fell down a rabbit hole, and my heart has never been the same since.
I was so moved by both Conner and Skye's story. Perspective is a major life teacher. Here I was praying for rest after being woke up to feed my son and there were these families, fighting to keep their children alive at the very same moment. The round the clock medication, the all consuming worry and grief as they watch their children struggle to breath. I was ashamed of myself for being annoyed that I was awake. With tears streaking my face, I vowed to do something about this horrible disease.
As I have spent the last 18 months being a Mommy and working towards becoming a Massage Therapist again; I began volunteering for the Cystic Fibrosis Foundation. It makes me so happy to do whatever I can to help out and I have such a drive to make a difference somehow. Conner, your story made me want to do it all! There are lots of children who are born with this every year, and despite advances in medicine, it still packs a hard punch and destroys families every day. I am planning on holding an event sometime down the road where the procedes will go directly to the Cystic Fibrosis Foundation. Keep your eyes on my calendar! Here is some information I found on Wikepedia and www.cff.org.
"Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). 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.
Symptoms of Cystic Fibrosis
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.
Statistics
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 45% of the CF patient population is age 18 or older.
The predicted median age of survival for a person with CF is in the mid-30s."
Mid thirties? That's just when life is getting really good! You may have just have become a parent, finally got to where you wanted to be in a career, and mid thirties is just too young for life to end. So what does all of this mean to you? People need to donate money, our time and our prayers to helping find a cure to this disease. To volunteer your time, or for more information, please visit
www.cff.org
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