Help Me Find A Cure

When I was 6 months old I was extremely sick and my parents took me in to the hospital.  Having no knowledge of what Cystic Fibrosis even is, they found out that I had it.

Now that I'm a little older, I realize how hard that must have been as new, young parents.  As hard as it is raising a child for the first time....just to add a disease that wasn't very well known on top of that would be a great challenge.  

I can't imagine what it would be like being told that your six month old daughter had a life expectancy of 18 years.  Or being told that treatments and medications would consume the life of your new born baby.  That money and finances would have to further be evaluated.  Or having the doctors tell you that your daughter would have difficulty in running and playing sports and doing things that "normal" kids do.  

To say the least...my parents are amazing. 

Sure, I'm the one that has it...but up until I got married they were the ones reminding me to do a treatment everyday, and to take my pills before each meal.  They were the ones that had the fear of that 18 year mark coming up.  I will never ever understand what they went through raising me.  I was too young to understand I even had anything "wrong" with me.

I guess what I'm getting at is that my parents are the greatest people alive.  They sacrificed everything they had just so I could outlive this awful disease and live a normal, healthy life.

I love you mom and dad.

Did my life pass when I turned 18?  No I'm 22 today and I'm still here.  I haven't even lived half of my life yet.  Do the medications and treatments consume my life?  Yes, but that's my life and how I've learned to live it.  Did I end up on oxygen never being able to run around as a normal child?  No...I was 100% normal and played every sport I wanted to.  I even played college soccer when my doctors told me I probably would never be able to.  

I outdid the odds because of two things...

First, because of people who care about me.  Like my parents of course, my brother and now my husband has to put up with me.  So many other people have made me do a treatment when I refuse to do it and everyone I know including friends and family have ALWAYS been better reminders of my pills then I am for myself. 

Second, the advancement in medication and technology.  The life expectancy has climbed to about 37 years now.  People are finding new things that are working and making other cfers like me....live.

So the big question...what is Cystic Fibrosis?  Here is a quick and very brief overview.  It is a genetic, life-shortening disease.  It causes and abnormal function in the sodium chloride channels in my body and causes excessive amounts of mucous.  My lung function is decreased compared to that of "normal" lungs, and my body can't get rid of the mucous fast enough.  It effects my digestive tract making it difficult for me to digest food (that's why I need my pills).  Last, there is a 50% chance I will not be able to have children.  It mostly effects the lungs...which is why it makes it such a scary disease.  More in-depth information is easily found by searching the internet.

Although my parents and I are still very close, they aren't holding my hand through this disease anymore.  It's up to me to stay healthy now.  It's easy for me to find ways to stay healthy because I've always been healthy (thanks again to my parents), but other cfers aren't as lucky.  Others can't afford the treatment or they just have a more severe case of it.  Kids are still being born with it today, and it breaks my heart knowing them and their families have to deal with it their whole life.  I'm old enough now, that I think I can make a difference...even if it's a small difference.

This year they came out with a drug called Kalydeco.  It's a drug that not cures, but improves lung fuction, lowers sweat chloride levels and helps patients gain weight.  They do not call it a cure, but patients with CF view it as one.  It is the first and only drug out there that is this close to a cure.  Unfortunately it is only for a certain gene mutation of CF that only a very scarce number of patients have.  I do not have it.  BUT that means they are close...they are SO close that is actually feels real this time.  

I don't exactly know how to go about it so I need help.  There are so many ways to raise money for CF. If anyone has any grand ideas I would love to hear about them.  Where it is so close in finding a cure, I just know that you would be able to see the effects of it.  You might just be the reason why they finally find a cure.  I am just beginning and researching ways I can help, but anyones input would be awesome!

There are bracelets that support CF and the money is donated to the Cystic Fibrosis Foundation, I think that is the first thing I want to do, and then maybe make a "team" for the Foundation.  Even if you just go to http://www.cff.org/ you can make a quick donation there.  

Thanks to those who took the time to read:)

Bay