Our profile this edition, is slightly different in that it comes from Miriam
Berry, 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
Webb and Alex Wasyluk are handcuffed and gagged when sleep is required. It is
otherwise impossible.
