Monday, May 6, 2013

Learning About Cystic Fibrosis: CF Awareness Month




This month, we completed a 5K walk in support of two of our friends, Tanner and Caleb.  They have cystic fibrosis.  I wanted to share with you a bit more of their story.  Their mom, Kiri, selflessly shares her story with you:

When I was 21 years old I got pregnant with my first son. We were to have him on a military installation and because it was a training hospital they test for all kinds of things just to practice testing. Luckily for us, one of the tests was a screening to see if I was a carrier of the Cystic Fibrosis gene. I found out at 4 months pregnant that I do carry the gene. My husband was tested about a month later and we found out that he was also a carrier. Tanner was born at the end of May in 2007 and was diagnosed with Cystic Fibrosis at 3 days old. The situation was a little scary at first but now, almost 6 years later it just seems like the life we were meant to have.

We had our second son in February of 2010 and he was diagnosed with Cystic Fibrosis at birth. Cystic Fibrosis is an exhausting, scary disease. The boys life expectancy today is 37 and sometimes that is hard to accept, but I know that all I can do is give them the best life I can.

 The boys have to undergo breathing treatments (5 a piece) and vest therapy every morning and every evening. Each time they eat they have to take pills (digestive enzymes). Thank goodness both of them can swallow the pills! We go see our Cystic Fibrosis team (pulmonologist, dietitian, respiratory therapist, and psychologist) every 6 weeks. The team we have at Children's in Dallas is amazing and have made so much progress in the few short months we have been here.

Tanner goes into the hospital for a tune-up about once every six months. And (knock on wood) Caleb has never been hospitalized! They are both very active, normal children to the rest of the world. They are both more than I could have ever hoped for! They are the strongest little boys I have ever met and I am so blessed to get to spend their life with them!

Kiri and her boys have great hearts and have been out with us to clean the creek (which is looking nice these days!).  The boys are active, kind, and FUNNY!

Take a moment to learn more about Cystic Fibrosis.  To learn more and/or donate to The Cystic Fibrosis Foundation, please use the following link:  www.cff.org/Great_Strides/JWalkers

Thank you, Kiri, for sharing your story and your boys with us!

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And, just a funny from my 6 year old:

Conversation in the car on the way to the Great Strides 5K Walk for the Cystic Fibrosis Foundation--
My 6 year old (confused): Mom, aren't we going to do a 5K walk?
Me: Yes.
My 6 year old: Then why are we driving?

1 comment:

  1. And thank you for being a part of our team and helping to spread the word! You guys are amazing and I'm glad I got the chance to become your friend!

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