Cystic Fibrosis

 

When I was fairly young a family that my family knew well lost their child to Cystic Fibrosis – she was in high school.  I grew up knowing that her lungs had failed her and that even though she had a lung and heart transplant her body rejected those and she passed away.   I didn’t understand much of her disease, but I knew it was called Cystic Fibrosis or CF.  I remember thinking it was sad, but really it seemed so far removed for me.  In college, I was introduced to someone who would come to mean a lot to me, Emily Haager.  Emily also had CF and from her I learned all about her treatment, her medications and the severity of CF.  She taught me how to administer her treatment where I would literally hit her as hard as I could over and over until she started coughing and spitting up mucus.  It was so hard to watch, but I knew that hitting her actually helped.  After college she got a vest that helped to shake her and release that mucus.  She went on to be a public speaker and advocate for finding a cure for CF.  She lived a beautiful life, but it was cut way too short when she passed away in 2010.

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My kids never had the chance to really get to know Emily and that makes me sad.  But I am committed to teaching them about CF so that they too can do whatever they can to find a cure.  While my kids did not know Emily, they have come to know a beautiful young woman by the name of Tess Dunn.  Tess was our neighbor in Santa Cruz and her family was a huge support/resource for me when Amalea started having seizures as Tess has epilepsy. Along with epilepsy, Tess also has diabetes and CF.

In July Tess and her mother and two other friends came to Portland as Tess was playing two shows (she is a beautiful singer/songwriter). It is so important to me that my kids have the chance to spend time with people who have a much different story from them and I am so thankful for the time they had to catch a glimpse of a life affected by CF.

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IMG_3438The girls getting autographs from Tess

October 4th, 2013 by Robin Leave a reply »

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