Cystic Fibrosis Stories: Raising Awareness One Life at a Time
In my literature class at Station Camp Middle School we wanted to do more than simply read books, write papers and take tests. After encountering media from Sir Ken Robinson we were encouraged and challenged to raise the quality of the classroom experience. The ideas that Robinson led us to invited, even demanded, change. We wanted to change my classroom. We wanted to change the world. So, we started our Change the World projects in each of my six different classes. Originally, we aimed to do a unique project in every class but once I realized how difficult and impractical that would be we shifted our focus to one thing. Since we had faculty members who were personally affected, I decided all my classes would confront cystic fibrosis. Little did I know how appropriate the choice was.
We started in our own building. Another teacher, Melissa Skaggs, was the first person we interviewed. Kindly, she shared her experience of being the mother of two girls, one of whom has CF. Melissa then referred us to a friend who had CF herself and when we contacted the Middle Tennessee Cystic fibrosis Foundation doors started to open one right after the other. Soon, we were speaking with teachers and family members connected with Station Camp Elementary, Middle and High School. Sometimes we walked next door to interview in small groups but more frequently people were kind enough to come and speak to us in person. The culture of our classroom was transformed as stories were told through laughter and tears. We were changing the world beginning in room 306.
The common threads of the stories were eye opening. One consistent similarity was a struggle with isolation. Patients who have cystic fibrosis are strongly discouraged from being together due to the risk of infection. The chance of sharing bacteria between CF patients is a factor that must be taken into constant consideration. In fact, it is common for CF patients to have almost no social contact with other patients at all. For children this can be very difficult. A child with CF is frequently the only one with CF that they know and if they do have another patient in their social circle then intentional distance must be observed. Some years ago there were even CF camps where children could go and connect with other others who shared their struggle. Now, this is no longer the case. Thankfully, in this age of texting and social media, CF patients are able to carry on long-term friendships with each other without the risk infection.
Another common thread with everyone we spoke to was courage. Several of the interviews we conducted were met with tears from our guests. Still, these courageous folks were willing to let down their guard in order for us to be blessed by their wealth of experience and knowledge. They saw fit to let their pain and struggle serve as the instrument for carrying the message forward. Their message was one of facing fear and daring to hope. It is their courage that motivated all of us to persevere and finish what we had started. Their courage shall be met with great reward indeed.
Now, this book is available to the world. Please, join us as we seek to fund the battle against CF by purchasing one of these books so you too can help change the acronym CF from cystic fibrosis to cure found.
Charlee Skaggs’ Great Strides
This is the page for Charlee Skagg’s Great Strides Walk in September. I just joined her team! I want you to join too!
This video gives an excellent snapshot of CF patient, Dane McBee. The video is about six years old but it gives a great view into the perspective of Dane and his parents and their experience at diagnosis.
The Middle Tennessee chapter of the Cystic Fibrosis Foundation is an impressive organization. Part of the reason they are so impressive is Kathryn Tuck. Ms. Tuck came to Station Camp Middle School in Gallatin on February 14, 2013 to speak to all of Mr. Tomlinson’s students about cystic fibrosis and to hear about some of the things she has experienced as a result of her five and a half years of work. One story that she relayed to Mr. Tomlinson and his students was about an email she received in January, 2012. The Foundation knew that the FDA was about to approve a new drug, Kalydeco. However, they were under the impression that the drug was not going to be approved until April. So, there was no small amount of rejoicing when the email arrived from the federal government announcing its official approval! This was four and a half years into Kathryn’s career and the weight that it carried was significant to say the least. Significance turned out to be a theme in 2012 for the whole chapter as they celebrated crossing the million dollar fundraising mark for the first time. Now, Kathryn continues to work week in and week out as she continues to raise funds, awareness and hope. Next up is the fifth annual Nashville’s Top 30 Under 30. Thank you, Kathryn!
The purpose of this blog is to tell the stories of families who are battling cystic fibrosis in Sumner County, Tennessee and its surrounding region.