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I had volunteered on previous occasions to assist at the annual
camp for the young people, as I saw it as an opportunity to give something back to
the people and Association that have helped my family in the past come to terms with
Huntington's Disease (HD) in our situation. When Dorothy asked me late last year
if my offer still stood I was happy to accept the challenge.
I began to think about what the camp might be like and how I should prepare for it.
It wasn't like a bike race where I could go out and train, or an
exam where I could sit down and study. All I could really do was to take the
clothes and personal gear that was recommended on the "camp list" and
turn up. I took comfort from my absolute faith in Dorothy's compassionate approach
with people and her knowledge and experience with Huntington's Disease, and so I
planned to very much take her lead.
My first task was to pick up a rental car and take the South Island contingent
from the Wellington airport to the Outdoor Pursuits Centre (OPC) located near
National Park in the central North Island. This kind of set the scene for the
week as during the four hour journey we all got to know each other a little
and the sense of camaraderie and friendship was obvious from these young people
who only got to see each other annually. This sense of unity continued as we
arrived at camp and the numbers grew. This was apparently the smallest camp
with only 15 people present and as there were no new faces the camp started
at pace.
I was actually the only new face and not surprisingly the young people were
wondering who I was and why I was there. Once they knew I was part of the greater
Huntington's family I was welcomed and trusted by them almost immediately.
The camp was basically "run" by the young people in that they chose
the outdoor activities they wanted to participate in during the day, divided
themselves into day groups and duty groups, divided the duties amongst the
groups and set goals for the week.
We completed several daily activities such as a "high ropes" course,
tubing down the Tongariro river in rafts they had constructed, caving and
climbing to the Emerald Lakes on top of Mt. Tongariro (an 8 hour tramp).
Following the daily activities and completion of
the "duties" there were sessions on Huntington's which again were basically run
by the young people. Although all activities were guided and initiated by Dorothy the
young people would soon be searching for as much or as little information as they needed
regarding the topic at hand. The evening sessions on Huntington's were for me the
Mark Chapple
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most interesting part of the camp. Each person involved demonstrated an unprecedented respect
for the others' personal situation and needs. There were times for discussion and
questioning and times for comforting and consoling. Some sessions were for relaying
personal stories, some for questions and answers and one particular session seemed to
evolve into a dedicated one on all aspects of predictive and foetal testing which seemed
to be of importance to all present.
All of the questions were remarkably probing, succinct
and carefully thought of and worded. As a group there was great support, strength,
friendship, respect and caring displayed whether someone was facing a personal challenge
on the high ropes course or the mountain, or regarding a concern about Huntington's and their
current situation. I have the utmost admiration for the courage shown by each of the young
people for even turning up at the camp and to confront and learn about Huntington's
Disease. They were a special group of people who like every teenager these days faces an
uncertain future but they are facing up to it with a determination, strength and maturity
of awesome proportions.
As far as "mucking in" - all the people on camp helped
with the duties and behaved to a point where the job of Dorothy and myself became
relatively easy enabling us to concentrate on specific needs of the group. Above all the
camp was great fun and the young people and Dorothy good company. I learnt a lot
participating in the daily outdoor activities and the evening Huntington's sessions.
Whether it was from a personal point of view or from the younger generations perspective.
One point which hit home and I will leave you with, is that with the discovery of the gene
in 1993 and the availability of a predictive test which defines the status of a person
"at risk" there seems to be a different focus for the next generation. Rather
than live in doubt and fear like previous generations had to, a new and possibly more
difficult challenge of learning about and confronting Huntington's faces these young
people. Each person now has real choices and decisions to make. A camp like this gives
them the place to learn about the facts in a safe supportive and unbiased environment. I
can only see it as a positive thing and encourage the continued support of the Association
and the families.
One last thing is to say a big thanks to Dorothy for her unselfish and
dedicated input in getting these camps "afloat" and happening year after year.
As the young people present said at the time "words cannot begin to describe our
appreciation." Your caring approach and presence will be missed by all. Thanks for
everything and take care. I hope to see everyone next year (the young people voted for
Fiji - 2002 ?!)
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