May is Cystic Fibrosis Awareness Month

Seems like these days theres a national month for most things and if nothing else, there’s a national day for something frivolous. May is the Cystic Fibrosis Awareness month. Most people aren’t familiar with CF, that used to be me.

CF is a disease parents pass onto their children affecting 35,000 people worldwide, only about 650 in the greater Orlando area. It’s the thickening of the mucus anywhere in the body, wreaking havoc mostly in the lungs and digestive track. Where a normal person can breath a bacteria and exhale it out without getting sick, with CF those bacteria’s are trapped in the mucus. CF destroys lung tissue, causing malnutrition, and shortens ones life expectancy to 37 years. The life expectancy is up tremendously from just 2-10 years old in the 1970’s, and not much more in 1990. The Cystic Fibrosis Foundation provides the vast majority of the funding in research of the disease, new medicine, and a generous support to help those affected by CF. CF is a very very expensive disease, one of which insurance companies try to escape their responsibilities and get away with their actions. It appears to me, 85% of all funding comes from the CFF. They are a very legit foundation, highest ranking possible for a foundation. I hope and encourage some of you to find it in your hearts to donate and spread awareness.


This is My Guy, My Hero! Andrew “Andy” Thomas. He’s 7 months old and was born with CF. On his 7th month birthday (210 days old) he had been hospitalized 102 days. He’s had 2 major life threatening surgeries, one at 20 hours old. He’s battled lungs infections, Salmonella Toxicity, Ostomy bags, another minor procedure with another minor one coming Monday. Hospitalized 5 times, totaling 109 days and counting, longest stint was 75 days. Last 9 day visit he was discharged on Easter. This week daycare called and said they had to send him to ER via ambulance. Turns out another 14+ day stay at the Arnold Palmer Children’s Hospital due to lung exacerbation due to bacterial pneumonia. This is very, very bad for CF patients. Yet he always smiles and lights up when he sees you. This is hard on my wife, she won’t leave his side when he’s in the hospital and worries nonstop everyday, hard on our 3.5 year old son As well.

Many people have medical problems, some are fortunate enough not too. Some who have the medical problems are fortunate enough to cover the expenses. Luckily somehow and by some miracle we are still barely in this group but for those that aren’t I know the CFF does their part in helping out. Either way the medical research thus far and the future research is accomplished by mainly The Foundation and the support it receives by individuals and corporations who donate.

Todd

I agree with Pete

I don't often say that but in this case I do

Jonny Quest wrote:    I have a friend with CF and he is now almost 30. JQ

After dealing with a disease with no cure you really appreciate the words “has” or “have” versus “had”. The change of one little letter gives hope.