Kaelyn's Kure: "give a little love" - our first documentary

Monday, April 2, 2012

"give a little love" - our first documentary

Last month Chad and I were asked if we'd be interested in sharing our story and filming a short documentary on CF to be used for awareness. As Kaelyn's mom, I like to take advantage of each opportunity we have to raise awareness because it's so very important to us.

So many people in our lives are now aware of what CF is, but a lot of people don't see the other side of CF - which is what it takes to care for Kaelyn and keep her healthy. It means a lot to us to be able to share our story with others......

If you'd like to support Kaelyn's Kure and the CF Foundation, please visit http://www.cff.org/Great_Strides/JulieWeber and click on "Click to Donate". Remember, any amount you can donate helps to make a difference in someone's life.

Thank you to all the wonderful people in our lives who continue to support CF and our dream of finding a cure. xoxoxo
Special thanks to Dan Burda for making this documentary - you're amazing!

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Today, nearly half of the cystic fibrosis population in the US are adults. This is due to:

Better antibiotics and airway clearance treatments. Right now, 40% of the cystic fibrosis population in the US are adults. The current median age of survival in the US is 36.5 years. CF used to be a disease of childhood, as patients with it lived only a few months in the early 1900's. By the 1950's, they were living long enough to go to elementary school and by the 1980's, the average lifespan was 19. Huge leaps in care and antibiotics have led to this improvement. May it continue!

True or False: I don't have to worry about having a child with cystic fibrosis, as no one in my family has it?

False. A person with cystic fibrosis has inherited the defective gene from both their father and their mother, for two copies. If you have inherited one copy of the defective gene, you are a carrier. 1 in 31 Caucasian Americans are estimated to be carriers. It also affects other races to a lesser extent. For more information on this disease, see www.cff.org. And please, help us fight CF!

We were completely shocked when we learned that Kaelyn had been diagnosed with CF just 13 days after birth. Just as the question states, we had no family history of CF on either side of our families. We have a 1 and 4 chance of having another child with CF, there is no guarantee another child of ours will have the same diagnosis.