Kaelyn's Kure: Kaelyn's Kure Walk T-Shirts

Wednesday, May 4, 2011

Kaelyn's Kure Walk T-Shirts

The Great Strides Walk is quickly approaching and we couldn't be more excited to participate in our first walk! Chad and I are taking orders for our team's customized t-shirt which will feature our team name in white font on a purple shirt. We choose purple since it's the CF awareness color! :)

Please let me know ASAP if you'd be interested in a shirt (and a size) for the walk on Sunday, May 22nd! If you are unable to make the walk, and would still be interested in purchasing a shirt in honor of Kaelyn, please let me know! Shirts will be approx. $5.00-$6.00 each. We are also checking on the availability of shirts in kids sizes as well for anyone who might interested!

We hope to get as many ppl as possible on the team to wear our customized team shirt in honor of Kaelyn! I will be posting more walk information over the next 2 weeks, so check back for updates! We look forward to seeing everyone at the walk! Thank you all for your efforts leading up to this day! :)

Love,

The Weber's

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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.