Wednesday, August 8, 2012

Dear Aven -
     I feel that these early posts are not just for you, but also to allow those following this journey to become informed about cystic fibrosis.  I am all the time running into individuals around town that ask about you and your disease and so many want to know what exactly is involved.  They usually admit that they do not know much about CF and many have asked if it is something that you will simply outgrow.  I do not want to come across that I have all the answers especially this early in the journey, but very few people know about this life altering/chronic disease.
      I have joined so many groups and have 'liked' so many pages dealing with CF.  I try to use good judgement when selecting what it is I view on-line.  Perhaps the best organization to follow is the Cystic Fibrosis Foundation.  This is a nationally recognized non- for profit organization established in 1955.  They are a major  driving force behind finding a cure. Currently they are making enormous strides in finding the best possible treatments for CF patients.  There is currently (2012) a drug on the market called Kalydeco which has extended the life expectancies of some CF patients. This drug has been successful for approximately 4% of the CF community.  Unfortunately it does not target your mutations DDF508.  However, on May 7, 2012 the CF community received wonderful news that Kalydeco in conjunction with VX809 had completed phase 2 trials and were showing great success for patients with the most common form of CF...your form.  I just know that each year you grow and you get stronger, there will be so many things that will be there to assist you on your journey.  Perhaps that is why I have a very special picture frame in my classroom this year.
       Having a chemistry background, I have also been very drawn to studying pathophysiology and genetics.  This has been great since your daddy took so many of these classes in college; he has been able to retrieve his old textbooks and allow me to view them.  As I read them it gives me chills in a way to know that so many years ago when your daddy was reading the chapters on CF and highlighting the words to prepare for a test, he was highlighting the words that would be used to describe your condition. It makes me sad because the emotions are still very raw, but I am learning how to handle things. I am getting stronger each day so that I can be there for you every step of the way.

                                                                               Much Love Today, Tomorrow and Always,
                                                                                              Your Mother -Autumn

I have this in a picture frame in my classroom!

1 comment:

  1. So good to see you today! Can't wait to meet all your girls!