May is Cystic Fibrosis Awareness Month. Many activities and events will be held to raise money for research to find a cure for cystic fibrosis. Cystic fibrosis is a genetic disorder that causes the lungs to fail, which typically leads to an early death. Research, early diagnosis, and medications have greatly increased the life span of individuals with cystic fibrosis to the average age of 35. Children with cystic fibrosis may have difficulty gaining weight, will eat a specialized diet to lessen digestive complications, and may be taking medicines to keep mucus build up in the lungs down. Children with cystic fibrosis can attend school, play sports, and do the typical things that any child would do.
Living with Cystic Fibrosis at School
The Cystic Fibrosis Foundation provides a great resource for teachers to learn how the disease will affect a child’s education at school. The handbook provides a brief introduction to what cystic fibrosis is and then covers how it may affect the student and how this will impact their education. Keeping your classroom clean, providing hand sanitizer, and allowing the student to use the restroom or leave the class if coughing, or to get a drink of water are common classroom adjustments. Encouraging the student to be active at recess, PE, or school organized sports is also encouraged to help keep their body strong. The child also needs to eat a higher calorie diet in order to continue growing, so allowing a snack time during class could also be an accommodation.
Based on my experience, the only adaptations that had to be made to the classroom environment were that the student could go to the bathroom when she needed or to get a drink of water, instead of having a limited number of bathroom passes per week. If she was out for extended periods of times due to complications from the disease I needed to keep in email contact with the classwork and assignments so that she could attempt to keep up when she was feeling okay to work at home. I also made myself available in the morning times when she would return to school to help her get caught up on assignments and missed activities.
Great Strides, the largest cystic fibrosis fundraiser of the year, will be held in many cities between April and May with individuals walking and being sponsored to raise awareness about this life threatening disease. The website link provides information about the walk, finding a walk in your area, and a place for sponsors to make donations toward your walk. There is also information about the foundation and cystic fibrosis to pass along to supporters.
Schools could also hold their own fundraisers to support the Cystic Fibrosis Foundation. My school holds an annual week of fundraising and awareness for CF. This includes a “change for change” program where students bring in change to donate to the foundation, a bake sale, and a “jeans for genes” program where students make a donation to wear jeans to school for a day. Students in the art classes also create roses for the 65 Roses Project. Over the past several years the school has raised a significant amount of money to donate to the Cystic Fibrosis Foundation.
Other school fundraising ideas include holding a benefit concert with student performers with proceeds going to the foundation, having students create rose crafts to sell at a craft sale, or holding a carwash to raise funds. Does your school participate in charity fund raising events? If so, please share your unique ideas !
Article By Laura Ketcham
Picture By mikebaird