Kaelyn's Kure: Great Strides on You Tube

Tuesday, March 29, 2011

Great Strides on You Tube

Be sure to check out Great Strides on You Tube from the Cystic Fibrosis Foundation's page.

http://www.youtube.com/CysticFibrosisUsa

It's awesome how this walk brings everyone together for such a wonderful cause!

Great Strides is one of the largest national fundraising events for Cystic Fibrosis every year... just another way to help CF = Cure Found! We are very excited to have a team this year for Kaelyn and look forward to the day of the walk! :-)

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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.