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! (“https://www.uwc.org/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!