CFRI Summer Camp: A Panel Addresses Questions

Notes on a panel moderated by John Bartelt, CFRI's Camp and Support Group Counselor, at the Annual CFRI Conference

Fall 1995

John Bartelt, CFRI's Camp and Support Group Counselor, after showing an inspiring video of children at CF camp, led a panel discussing the benefits and risks of camp. The panel began with CFRI's Camp Director, Alisa Evans, discussing the structured educational program. Children from ages five through 11 attend "Life Classes" four mornings during the week. Each year a theme is selected and the lessons are taught following this theme. Last year the theme was Reach for the Stars, and children were encouraged to dream about potential vocational goals and careers. Within this format, the children also learn about cystic fibrosis, the latest research, hygiene, germs, and how to take care of themselves. These lessons are re-emphasized throughout the day as the children move from activity to activity. Medications are left out for the children to self-administer (although counselors are keeping a close eye on them to make sure they do it). There is ample opportunity to learn independence and good health habits.

Next, John Bartelt spoke on the emotional benefits of camp. He conducts multi-level rap sessions daily where kids can talk honestly about their feelings in a safe place. They can share a personal triumph among peers who understand how hard earned the victory was, or express grief over an ill or dying friend. He added that in a group of CF children, self-image becomes less important, children stop worrying about how they look or sound, and the situation is very normalizing. The information sharing between adults and children with CF builds confidence. Young children are exposed to positive adult CF role models and they develop a camaraderie with each other. Suddenly a youngster's health care takes on new meaning.

Dr. Meg DeLano, CFRI's Camp Medical Director, discussed the medical protocol at camp. She assured the audience that every effort is made to ensure that camp is safe and that there is no cross-infection. All children must submit a culture showing Pseudomonas aeruginosa one month prior to camp. Any youngsters or adults with Methecillin-Resistant Staph aureus (MRSA) or Burkholderia cepacia are not permitted to attend. Handwashing and other hygiene issues are stressed constantly, and sharing of cups and silverware is not permitted. Dr. DeLano concluded that in her opinion it might be more of a risk for preteens not to come to camp. She pointed to their need to see older teens taking their health care seriously and performing their medical regimes religiously. She said their need to identify role models for themselves as they separate from parents was extremely important at that age.

Finally, two adults with CF added a few moving comments. Isa Stenzel said she finds camp very inspirational and feels a compatibility with everyone that is not possible elsewhere. She said she learned how to control her disease watching and talking to other adults at camp. Poignantly she concluded that experiences and emotions that she had kept inside all year could be shared and released at camp, making for a very cathartic experience.

Adam Thompson briefly added that he never knew any other people with CF until he went to camp. He became inspired and realized he wanted to grow up and be like the other CF adults. He assured parents in the audience that he would rather go to camp and get sick than not go at all. Several comments were added from the audience. One mother interjected that she would rather send her kids to camp than to school because their chances of getting sick at school were so much higher. With the emphasis on hygiene at camp, she said the worst thing they come home with are mosquito bites! Another young man with CF then shared that he had never attended CF camp, but after watching the video and listening to the panelists and campers he realized that there had been a void in his life. He added that he was very eager to go to CF camp next summer.

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