May is Cystic Fibrosis Awareness Month
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Printed Date: April-29-2024 at 1:00am
Topic: May is Cystic Fibrosis Awareness Month
Posted By: Orlando76
Subject: May is Cystic Fibrosis Awareness Month
Date Posted: May-04-2019 at 12:49pm
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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. ------------- Please support The Cystic Fibrosis Foundation 1976 Ski Nautique 351 Escort 1993 Ski Nautique purple and black 351 HO PCM |
Replies:
Posted By: 8122pbrainard
Date Posted: May-04-2019 at 2:13pm
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Todd, My prayers go out to you as well as my support. Pete ------------- /diaries/details.asp?ID=1622" rel="nofollow - 54 Atom /diaries/details.asp?ID=2179" rel="nofollow - 77 Tique 64 X55 Dunphy Keep it original, Pete < |
Posted By: KENO
Date Posted: May-04-2019 at 7:40pm
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Todd I agree with Pete I don't often say that but in this case I do 
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Posted By: Jonny Quest
Date Posted: May-05-2019 at 10:56am
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Thanks for sharing, Todd. I have a friend with CF and he is now almost 30. Medical understanding and treatment has come far...with still much farther to go. God bless... JQ ------------- Current 2003 Ski Nautique 206 Limited Previous 2001 Ski Nautique Open Bow 1994 Ski Nautique Open Bow Aqua skiing, ergo sum |
Posted By: Orlando76
Date Posted: May-06-2019 at 9:10am
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. ------------- Please support The Cystic Fibrosis Foundation 1976 Ski Nautique 351 Escort 1993 Ski Nautique purple and black 351 HO PCM |
Jonny Quest wrote:Posted By: fanofccfan
Date Posted: May-07-2019 at 12:17am
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Wow. Your story adds perspective to everyday life. All smiles......handsome young man. ------------- 2004 196 LE Ski 1969 Marauder 19 1978 Ski |