Did You Know?

Hey! I know you missed me, I'd miss me too! I took a hiatus to finish the fundraiser I was helping to coordinate to raise money to fight Human Trafficking. Something that I'm so passionate about I've posted about before, and will again I'm quite sure.

Getting back to it. A big part of my blog is in regards to health and wellness. A part of that, is learning about new and different things. One of those things is Cystic Fibrosis. I've heard about it, I've swam for it - twice, but if I'm honest with myself and you, I know almost nothing about it. I know it's a bad disease, and life expectancy is not long. But really, what is CF??

I have dear friends at my church whom are some of the best people in the world. In fact, James Fruits is SO Awesome, the mayor of the city they live in named a day after him! ... Yeah ... And one of the MANY things that make them amazing, is their daughter Mylee. The only single word I can offer to describe miss Mylee is Firework. She's bold and beautiful, sparkly and bright. While her stature is not big, her heart and her personality MORE than make up for it. She has a twin brother Malachi but for some reason, Mylee was the chosen one to be born with CF. I don't know why, that's only for God to know, but I DO know that there is no prettier, spunkier, sparkly face to put on a disease. That's truly how I see it. Mylee has a disease, the disease does not have her. Wish I could say the same about some things in my life.

So get on with it Christie, get a grip and tell me what is this disease?! Right, sorry, I was caught up with imagines from YouTube video's of Mylee putting on dance parties in her hospital room! But I asked James and Christie, not me, James' wife - yes we spell it the same, there is more than 1 Christie in the world, get over it. I asked them if they could give me more info on this disease, so I could both educate myself AND you. Here is the breakdown. Cystic Fibrosis (CF) is a "chronic inherited disease that affects both the lungs and the digestive system." Basically what happens is when a person has a disease it can usually be linked to a defective gene and or proteins that fold incorrectly. (Yeah my tech geek hubby used to do what's called "Folding At Home" a computer program some super smart university people developed to fold proteins until one miss folds unlocking information about various diseases. Your computer sends that info back to the U and they collect and analyze the data. Comment below for more info!) And a person who has CF has a defective gene who's protein associated with that gene produces a super thick "sticky mucus that clogs the lungs" which can lead to many potentially life threatening infections and it "obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food." So even people with normal healthy hearty appetites can be small developmentally.

Basically people with this disease will make frequent trips to the hospital for various periods of time to fight and prevent infections that are so easily developed. To be honest, it sucks. Did you know that May is CF Awareness Month? Did you also know that there are nearly 1,000 new cases diagnosed each year and already 30,000 people living with CF currently in the United States? Did you know the estimated average life expectancy for a person with CF is late 30's? I didn't.

But I'm all about ending on a positive note. So even though this disease is a stupid dumb head, there's a little light at the end of the tunnel.  About 70% of those diagnosed are diagnosed around age 2. We all know that early diagnosis and seeing things early can help start treatments and early planning. Suffice it to say back in the 1950's babies diagnosed with CF never made it to elementary school. Now 45% of the current CF population is age 18 or older. And there are more and more people joining the fight to find a cure each day. Since 1955 The Cystic Fibrosis Foundation has been the dominate force in leading the way for a cure. They are HONESTLY getting closer every day. And by they I mean the smart people, not the one's like me who sit a computer and ramble on to themselves.

On Saturday May 18 my friends The Fruits 5 (James, Christie, Malachi, Mylee and Max) are doing their annual Mylee's Miles of Smiles walk athon to raise money AND awareness for CF. This is extremely vital in education and research to end this. I love Mylee. She's a Mylee-work, an effervescent Firework of personality and perseverance.

If you want to learn more about CF, how you can help, or the walk please visit: http://www.cff.org/great_strides/ ... Because late 30's is too early for this ... http://www.youtube.com/watch?v=ipUDskxgSTo