Contact UsMiriam
Our profile this edition, is slightly different in that it comes from Miriam, who was a counselor at Camp Sundown this year.
Camp Sundown 2000: a shutting of curtains but opening of eyes
I hadn't heard much about Xeroderma Pigmentosum before reading last summer's Sunday Times article about Camp Sundown. Only a brief mention in a lecture on Medical Genetics where we were more interested in learning the genetic principles exhibited rather than studying its effects on actual people. This is often a problem at medical school; one is so busy cramming scientific facts to pass exams. that it's easy to forget that patients are people with lives of their own, not provided solely for the furthering of science. One of the things about the XP Society that has so impressed me is the way in which neither medical research nor patients are neglected. While money is raised to promote scientific research into the condition, equal funds are used to improve the every day living of those affected.
I volunteered at the camp for two weeks. The first of these was for older patients, usually in their twenties or thirties. I wasn't prepared for the disfigurement that some of them displayed, I had forgotten the harsh realities of XP in my excitement about volunteering. Several of them had surgery scheduled for the week after they left camp which added considerably to their reluctance to leave. It also came as a surprise to me to learn that nearly all the patients had lost siblings to the disease. This somehow added to the somber air of the whole week. Sometimes there was a feeling that the happiness was slightly forced, covering a deep depression that was felt by many.
The second week was entirely different. The guests were children from all over the world, usually accompanied by their parents and siblings. The school bus we used had been fairly empty in the previous week but suddenly we were finding ourselves squashed three to a seat in an attempt to accommodate everyone. I had been away for the weekend between the two weeks of camp and my train returning was delayed. As I opened the door to the conference room in which the first night festivities were taking place, I was met by the sight of dozens of youngsters running around with their faces painted, cowboy hats on and fake tattoos liberally applied. It could not have been more different from the previous week. There were children however, used to scorn and ridicule from classmates, who were unable to join in easily, fearing similar treatment. Some of the stories I heard from campers were horrifying; an Israeli family who ran a very successful restaurant that went bankrupt after rumours that a family member had a contagious skin disease; a native American lady who had been ostracised by her own people after her daughter was diagnosed with XP (in native American folklore such conditions are believed to result from wrong doing by the mother); a family whose affected son is being deprived of a proper education due to the local authorities failing to make adequate arrangements for his protection from UV light. While it was awful to hear these things, it must have been a huge relief for the parents to find themselves in the company of people who understood entirely what they went through on a day to day basis. The camp didn't just provide a holiday for the children.
The last night of the camp was jam packed with activities. Firstly dinner at a local pizza restaurant with an awards ceremony in honour of the children's achievements. Then a visit to the local baseball team, the Hudson Valley Renegades, where the campers were treated to expert training (and the young female volunteers to the sight of the players' tight trousers). Finally we went to Freedom Park where pony rides, fencing and much more were on offer. Everyone wore glow in the dark necklaces, and the memory of seeing scores of strips of light running around in the dark is one that will remain with me for a long time. Saying goodbye was hard, a lot can happen in a year, especially when exposed to the constant threat of UV radiation.
It was a truly great experience volunteering at the camp, humbling yet somehow empowering as I realised that I could make a difference, albeit a small one. The prospect of a Camp Sundown UK is wonderful, and exciting. There were four UK families in New York State, and I am sure that all will recommend the camp whole heartedly to other families. Media coverage of the condition is gaining momentum, and this can only help to raise funds for and public awareness of the XP Society. It is something in which I feel really privileged to be involved.
Health warning to potential volunteers: ensure that Holly and Alex W and Alex W are handcuffed and gagged when sleep is required. It is otherwise impossible.
Camp Sundown 2000: a shutting of curtains but opening of eyes
I hadn't heard much about Xeroderma Pigmentosum before reading last summer's Sunday Times article about Camp Sundown. Only a brief mention in a lecture on Medical Genetics where we were more interested in learning the genetic principles exhibited rather than studying its effects on actual people. This is often a problem at medical school; one is so busy cramming scientific facts to pass exams. that it's easy to forget that patients are people with lives of their own, not provided solely for the furthering of science. One of the things about the XP Society that has so impressed me is the way in which neither medical research nor patients are neglected. While money is raised to promote scientific research into the condition, equal funds are used to improve the every day living of those affected.
I volunteered at the camp for two weeks. The first of these was for older patients, usually in their twenties or thirties. I wasn't prepared for the disfigurement that some of them displayed, I had forgotten the harsh realities of XP in my excitement about volunteering. Several of them had surgery scheduled for the week after they left camp which added considerably to their reluctance to leave. It also came as a surprise to me to learn that nearly all the patients had lost siblings to the disease. This somehow added to the somber air of the whole week. Sometimes there was a feeling that the happiness was slightly forced, covering a deep depression that was felt by many.
The second week was entirely different. The guests were children from all over the world, usually accompanied by their parents and siblings. The school bus we used had been fairly empty in the previous week but suddenly we were finding ourselves squashed three to a seat in an attempt to accommodate everyone. I had been away for the weekend between the two weeks of camp and my train returning was delayed. As I opened the door to the conference room in which the first night festivities were taking place, I was met by the sight of dozens of youngsters running around with their faces painted, cowboy hats on and fake tattoos liberally applied. It could not have been more different from the previous week. There were children however, used to scorn and ridicule from classmates, who were unable to join in easily, fearing similar treatment. Some of the stories I heard from campers were horrifying; an Israeli family who ran a very successful restaurant that went bankrupt after rumours that a family member had a contagious skin disease; a native American lady who had been ostracised by her own people after her daughter was diagnosed with XP (in native American folklore such conditions are believed to result from wrong doing by the mother); a family whose affected son is being deprived of a proper education due to the local authorities failing to make adequate arrangements for his protection from UV light. While it was awful to hear these things, it must have been a huge relief for the parents to find themselves in the company of people who understood entirely what they went through on a day to day basis. The camp didn't just provide a holiday for the children.
The last night of the camp was jam packed with activities. Firstly dinner at a local pizza restaurant with an awards ceremony in honour of the children's achievements. Then a visit to the local baseball team, the Hudson Valley Renegades, where the campers were treated to expert training (and the young female volunteers to the sight of the players' tight trousers). Finally we went to Freedom Park where pony rides, fencing and much more were on offer. Everyone wore glow in the dark necklaces, and the memory of seeing scores of strips of light running around in the dark is one that will remain with me for a long time. Saying goodbye was hard, a lot can happen in a year, especially when exposed to the constant threat of UV radiation.
It was a truly great experience volunteering at the camp, humbling yet somehow empowering as I realised that I could make a difference, albeit a small one. The prospect of a Camp Sundown UK is wonderful, and exciting. There were four UK families in New York State, and I am sure that all will recommend the camp whole heartedly to other families. Media coverage of the condition is gaining momentum, and this can only help to raise funds for and public awareness of the XP Society. It is something in which I feel really privileged to be involved.
Health warning to potential volunteers: ensure that Holly and Alex W and Alex W are handcuffed and gagged when sleep is required. It is otherwise impossible.
posted by XP Support Group at 3:24 am
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Jeans for Genes 2006
