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May is Cystic Fibrosis Awareness Month - Please Support


Orlando76
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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.

 

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This is My Guy, My Hero! Andrew “Andy” Thomas. He is why there’s a purple ribbon for my picture. 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. Hospitalized 5 times, totaling 109 days and counting, longest stint was 75 days. Last 9 day visit he was discharged on Easter. Today 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. 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 too.

 

I’m not looking for my moment in the internet or sympathy. There are some families who in no way can afford the formulas, medicines, 4-5 weekly doctor visit co-pays etc. Luckily we barely can some how make it. But I know what the CFF does for those who can’t and I hope others will support the CFF.

 

Thanks to Ball of Spray I have met (online) some that work for CFF. Some who have children with CF and some ballers battling CF. I’m very thankful for these people ( and BOS for unknowingly linking us up). It means so much to me to be able to ask them questions from their personal experience because I can’t ask my 7mo and he can’t describe what he goes through.

 

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@Orlando76 you are welcome to ask me questions anytime. CF sucks, I won’t lie. Just had a PICC line put in today for an exacerbation. I have 10 days of IV antibiotics to do. Andy and I seem to be on the same wave length. I may complain and I may feel sorry for myself occasionally but I am fighting this with everything I have . I promised my husband I would live to be 110 so I have 65 more years that I promised him. And I plan to water ski for the next 65 years. Everyday I pray that they find more medicines that will improve our lives and slow down the degrading of my lungs. Please if you can, donate.

Kim- age 45 living with CF

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@Kimbymon amazing run, keep it up. You don't have to go too far back in history to see really poor avg life expectancies...then the U of M changed the game back in the day...groundbreaking program at the time with the best results in the country. I remember hearing all about it as a med student at the University of Iowa and how they were playing catch up at the time.
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