Susan's Transplant Video is on You Tube

Susan Burroughs, the Founder of Cystic Fibrosis-Reaching Out Foundation has now put her transplant video on You Tube. To see the video please go to and search "Susan Burroughs".

Tuesday, October 7, 2008

Claire Tinsley teaches 3rd graders about CF

“We’re having a fundraiser at Walker, and I want the proceeds to benefit CF somehow.” Those were the words of my next-door neighbor, Kerry Morris, a 3rd grade teacher at The Walker School in Marietta – words every CF parent likes to hear! Kerry wanted to the funds to be used locally, and so I contacted Amy Shipp, the Social Worker at Children’s Hospital at Scottish Rite, for ideas. She recommended the Reaching Out Foundation, and cited its many instances of financial help given to CF families in need. I was easily persuaded.
Kerry also asked if my daughter, Claire Tinsley, could speak to the third-grade class before the bake sale fundraiser; she felt it might get them more enthused if they had a face that they could connect to Cystic Fibrosis. Claire was diagnosed at birth, and so has lived with CF for almost 15 years; it is not difficult for her to talk about what her “normal” life is like.
On Thursday, September 11, 2008, I checked Claire out of Harrison High School early and drove to the Walker campus, carrying Claire’s vest machine, her inhalers, and a plastic baggie filled with the myriad pills she takes in one day. At the library where the kids were politely seated, we plugged in the vest machine, and Claire introduced herself, telling the students about the basics of CF - she then asked for a volunteer to try out the vest. Claire chose a boy who was closer to her size than many of the other 9 and 10 year-olds and strapped the vest onto his chest. She programmed the frequency and pressure (not too high!), and turned it on. He immediately began laughing, as did all the children, and they got their first lesson in airway clearance!
She spoke briefly about her symptoms, her daily routine and her feelings of being a normal kid with just a slightly different lifestyle. She then opened the floor to questions and boy, did they have questions!
Q. “Do the pills taste bad?” A. No, except sometimes the antibiotic pills are big, and they taste bad if I don’t swallow them quickly.
Q. “Are there any activities you can’t do?” A. I can pretty much do anything, except I’m not supposed to scuba dive, or go to a very high altitude, except when I’m in a pressurized airplane.
Q. “Can you go trick-or-treating?” (He was worried because she told them she does her treatments at night, and that they take a long time). A. “I never miss it!”
Kerry gently closed the floor to questions and the kids gave Claire a round of applause. The next week, she received a stack of thank you notes written in neat, cursive handwriting; one little girl wrote, “I love you. I want you to be my babysitter.” I don’t think Claire could receive any greater compliment.
The Walker School fundraiser netted around $900, and we couldn’t be happier to see that donated to the Reaching Out Foundation.


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