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  • CF Camp Memories

    Posted by jenny-livingston on September 1, 2020 at 9:16 pm

    Some of my favorite memories from childhood include my time spent at CF Camp. Before the dangers of cross infection were known, children with CF and their siblings were sent to sleep away camps in the summer. Growing up, I thought this was something specific to the area we lived (San Diego) but as I got older, I learned that these camps were pretty widespread.

    The camp my siblings and I attended was called Camp Pillfeather. We’d stay in cabins with campers in our age groups — sharing bunk beds, getting manual CPT, and nebulizing our meds in the same room. Some of our counselors had CF as well; some were family members of a person with CF. Before each meal, the “pill bell” rang loudly, summoning campers to the cafeteria where we’d line up to get our pills, handed out by nurses and other healthcare providers. There were crafts, fishing trips, swimming pools, camp songs, costume contests, dances, and early morning camp-wide games of Simon Says.

    It was truly one of the coolest and most fun experiences! Our camp was shut down in 1994 when the risks of people with CF spending time together were becoming more well-known. I’ve heard that some of these camps continued into the 2000’s! While I’m glad that we now understand cross infection and take measures to prevent it, I will forever be glad to have grown up in a time when things like CF Camp existed!

    Did you ever attend a CF camp? If so, what are some of your favorite camp memories? If you’re a CF parent or person with CF born after the early 2000’s, the idea of having dozens of people with CF gathered together probably seems so foreign and perhaps even scary. What are you thoughts about CF camps? 

    I was able to find this video yearbook on YouTube (which includes footage of both my sisters!) from Camp Pillfeather in 1989. 

    jenny-livingston replied 3 years, 8 months ago 2 Members · 3 Replies
  • 3 Replies
  • john-f-schroeder

    September 9, 2020 at 11:30 am

    We had 2 kids with CF, Ann, and Tom. We have a 3rd, mike, wo doesn’t have CF. Ann passed away in 2009. Tom is doing very well and at age 45, having started Trikafta in Nov 2019, he is looking forward to a long, healthy life!

    In 1982 an international school opened up in NM. It was called “The Armand Hammer United World College of the American West” (that’s quite a MOUTHFUL :)! now known as UWC-USA! (“”) There are approximately 20 of these institutions around the world, and they are open to students aged 16-19 who are interested in a rigorous two year education – typically students do their last 2 years of high school at a UWC – leading to an International Baccalaureate. When my daughter, Ann, heard about the school she was interested in exploring it.

    The goal of the UWC institutions is the foster international cooperation, and in perusing that goal, each school has students from all over the world. Teachers are also from many countries,. The students live at the school for their two year stay, with off for Christmas and other holidays as well as the summer between their first and second years.

    In the fall of 1982 – LONG BEFORE the cross infection issues for kids with CF were considered a problem – we were approached by the Dean of Students of the UWC-USA about what their students could do for kids with CF! The students are required to work with the local communities on community service projects and such. Andrew Maclehose, the Dean, had worked at the UWC in Wales, and their students had worked with people with CF in their community. He suggested they night do a Camp for kids with CF.

    That was all Ann had to hear and she was totally game for the idea. Tom wasn’t as sure as Ann, but was interested in a camp for kids with CF. So we worked with the school and a student from Australia, Paul Grimes, and the first CF Camp was held in June of 1983! Both our kids LOVED it. First, and foremost, they met a lot of kids with CF and were able to share their common experiences. Secondly they had about 10 counselors, all UWC students from around the world, with various accents, and skin colors, from South America, Europe and Africa. It was our kids first exposure to such a variety of international kids. THEY LOVED it. They made, and stayed in touch with, many new CF friends, as well as learning a lot about the various countries the counsellors came from, AND, they played games, swam, soaked in a natural hot spring, cooked out. In short they had a BALL!

    The students were all trained in the daily CF regimens – lots of pills, 2 or 3 sessions of “Postural Drainage” lots of liquids etc. The campers helped them out with all their care. It was a very warm, mutually beneficial, and synergistic experience for them.

    The BEST thing to come out of the camp experience was that we all – parents and kids – made lifelong friends, who we see fairly often, and communicate with often. The other GREAT THING was that Ann was able to attend the UWC-USA in Montezuma, NM. It was one off the best experiences of her short life. In the summer between her first and second years, she travelled to Europe and the Middle East – Egypt, and Israel – to meet up with friends, and other UWC people.

    After she finished college, she was invited to join the International UWC Board of Directors and an Alumni Representative. She also worked for 2 years at the UWC-USA. She met and befriended Queen Noor of Jordan and met Nelson Mandela on a trip to South Africa with the UWC Board. It was an amazing experience for her – and for all of us – all coming from a CF Camp when she was 14 !! So it wasn’t “just” the camp, but all of the things that she enjoyed all throughout her adult life.

    Our son, Tom, also loved the camp and the people. He wasn’t interested in attending the UWC, but he still has friends from the camp, as well as the counsellors. He looks on the camp as one of his best experiences as a kid with CF!

  • john-f-schroeder

    September 10, 2020 at 8:37 pm

    I need some help 🙂 I got an email that had a reply to my above note about CF Camp memories from Bailey Vincent. It was a lovely note and I wanted to reply. BUT … I clicked on the link in the email that said “Go to the discussion to reply or catch up on the conversation.” and I came back here where I can’t see anything about replying to Bailey! WAAAAA! So What’s the trick? How can I replay to a reply on my note???

    Can anyone help me?

    And, by the way, if this is the ONLY way to reply – THANK YOU VERY MUCH BAILEY VINCENT! 🙂

  • jenny-livingston

    September 11, 2020 at 11:05 am

    John, I truly wish we had a better answer. We’ll ask our supervisor, and we’ll keep trying to figure it out. In the meantime, please keep posting and responding. We love reading your thoughts!

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