Chapter 9 – Memories & Stories

“Playing the Cards Life has Dealt”

I was the poster child for the Cystic Fibrosis Foundation for 1985.  While poster child for the CFF (Cystic Fibrosis Foundation), I met Frank Deford (father of Alex Deford whom a movie was made about her life with CF), local celebrities and professional athletes.  I was interviewed by the local paper a few times, attended CFF fundraisers and much more.  There is a CF Fundraiser Ball every year and when I while poster child I was able to attend.  There I met many famous people and got a lot of attention.  It was a way to let people see what CF looks like in real life and not just the foundation that people were giving to.  The poster child/children showed the faces of CF and educated and spread awareness about CF.

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Chapter 4 – School Years

“Playing the Cards Life has Dealt”

When school started it was fun for me but terrifying for my parents.  I was the normal kid running, playing, and joking around.  Every year my mom would have a conference with the teachers and the school nurse to inform them about CF and what to expect with me.  I would also get up in front of my class and talk about CF and during that time then the kids were able to ask me questions.  My hope was that they would ask all the silly questions then so that I would not be talked about later.

School was fun for me.  I liked to learn and be around all the other kids.  I was a social butterfly.  I was unable to do some of the things that other children were able to do like going outside and playing if it was cold.  I had to stay inside during recess if the temperature was below fifty-five degrees.  I know my mom was doing this to protect me from getting sick but it was no fun to be the only kid sitting inside during recess.  I did manage to go outside when the temperature was above fifty-five degrees but then I did not want to come inside.

I did have special academic testing at school due to the fact that I was absent a lot because of being sick.  The testing was to make sure I was learning on the correct level and also so that I could have tutors when I was out of school for a long period of time.  We also had to set up an IEP (Independent Education Plan) so that when I was sick and missed school I could still stay right in line with my class.

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