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Huntington's Scene In New Zealand |
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National Annual Camp for Young People From HD Families |
CAMP FOR YOUNG PEOPLE FROM FAMILIES
WITH HUNTINGTON'SDISEASE
17-23 APRIL 1998
REPORT by DOROTHY TORTELL Social
Worker
June 1998
Wellington Huntington's Disease Association
INTRODUCTION
As a result of positive feedback from all those who attended the fourth
Camp held in 1997, the Wellington Huntington's Disease Association
organized a seven day Camp for young people from families with Huntington's Disease. We
welcomed all young people between the ages of 10 - 25 years. For the first time this year,
we held a 2 day Camp for those participants who were aged 18 - 25. This took place from
late in the afternoon on Friday 17 April to the afternoon of 19 April at Camp Wainui, just
over 30 minutes out of Wellington. This group then moved on Sunday afternoon to join the
younger campers at the Waikanae Christian Holiday Park one hour north from Wellington.
Both sites proved to be excellent venues for the Camp with wonderful facilities meeting
all our needs. The management and staff were very generous with their support and help
throughout the planning phase and the running of the Camp.
As in previous years, the Camp comprised a mixture
of outdoor/indoor activities with several discussion groups. Once again this year we
employed, David Clegg of Active Connections to organize all the outdoor activities as well
as many of the indoor ones. We were very fortunate to have David's advice, help and
support before, during and after the Camp. Anne-Marie Stapp, once again joined us as the
Counsellor and planned and facilitated most of the indoor activities. As always,
Anne-Marie provided invaluable support and she has become an important mainstay of the
camp. Jonathan Hesp, Wendy and Dave Silcock and Mary Gilmour, Chairperson of the
Christchurch Association, joined us again this year. Russel Campbell joined us as a helper
for the first time this year. Without the wonderful help and support, encouragement and
insight of all the facilitators/helpers, this Camp would not have run as smoothly as it
did.
CAMP OBJECTIVES
The Camp had the following Objectives -
For young people from families with Huntington's Disease to meet others from similar background circumstances
For the young people to share information and experiences about Huntington's Disease
For the young people to support each other and by doing so, develop a mutual support network
For all the participants to have fun.
The Camp was a great success and all the objectives are considered to have been met. Campers managed to meet other young people in the same situation and learn how they coped; they spent time with other people who understand what they are going through and gained support from people in the "same boat"; they renewed friendships from previous Camps and made new friendships; they overcame feelings of isolation; they shared information and through this, gained new confidence.
CAMP ORGANIZATION
Venue Waikanae Christian Holiday Park
Camp Wainui, Wainuiomata
Camp Organized by Dorothy Tortell
Recreation /Activity Coordinator David Clegg (Active Connections)
Counsellor/Facilitator Ann-Marie Stapp
Camp Helpers Mary Gilmour Jonathan Hesp Wendy Silcock Dave Silcock
Russel Campbell
FUNDING AND COSTS
FINANCIAL SUPPORT RECEIVED
Rotary Club of Greenmeadows, Napier................................. 500.00CAMP COSTS
Fee for Recreation/Activity Coordinator
................ .............. 4,050.00
Fee for Counsellor ............................................. ................
1,200.00
Honoraria for camp helpers ................................. ............
900.00
Waikanae Christian Holiday Park.......................... ........
4,548.35
Camp Wainui
.............................................................
918.00
Transport to and from airport ..........................................
300.00
Petrol vouchers and mileage.............................. .................
1,029.91
Stationary and sundry for indoor activities ......................
280.66
Horse riding .......................................................................
..168.00
Use of Wainui Challenge Ropes course and equipment
462.28
Transport costs for rafting, rock climbing, abseiling etc
45.45
Hire of facilities & equipment for rafting,
flying fox, abseiling &
rock climbing ......................... 875.00
Staffing costs for rafting, flying fox, rock climbing & abseiling
450.00
GST on use of equipment, staffing, transport,
venue for rafting etc..................................
329.10
Wellington Carnival Street Band ..........................................
100.00
Mr Fungus (clown)...................................................
281.25
Sundry items.....................................................................
219.08
Extra cakes and drink .........................................................
59.79
Financial assistance to enable two participants to attend Camp
298.25
Toll calls and cell phone costs
.............................................. 400.00
TOTAL $16,915.12
Social Worker's salary for the 7 days at Camp and
time spent in planning, organizing and preparing for the Camp, are not included above
PARTICIPANTS
It was really nice to welcome back the 22 campers
who have participated in previous Camps and the 12 campers who were joining the Camp for
the first time.
The total number of campers was 34 (21females and 13 males)
10 family groups made up a total of 25 young people
Age range 10-23 years -
10 years one camper 11 years
two campers
12 years two campers 13 years four campers
14 years four campers 15 years four campers
16 years two campers 17 years two
campers
18 years six campers 19 years one camper
20 years one camper 21 years one
camper
22 years one camper 23 years
three campers
The campers came from 10 towns/cities as follows-
Tauranga 4 Napier 4
Palmerston North 3
Wanganui 2 Wellington 8 Nelson 4
Greymouth 2 Christchurch 4 Ashburton 1
Invercargill 2
CAMP PROCEDURE
Weekend Camp
Participants started arriving at Camp Wainui early
on Friday afternoon, with the last camper arriving late in the evening. Thirteen
participants joined us for the weekend, six for the first time. The emphasis was on
sharing knowledge on Huntingtons Disease and ways of coping with the stress of the
condition, as well as giving the participants the opportunity to improve their leadership
skills. The venue was excellent as it enabled the campers to experience the challenge of
the flying fox and high and low rope courses. We went off site for horse-trekking and a
meal out at a nearby restaurant. As well as the outdoor activities, we held discussion
groups on Huntingtons Disease, on stress and ways of managing stress. Participants
were encouraged to tell their "stories" and share their experiences with the
other campers.
As the theme of this weekend was "Challenge by Choice", all participants were
not obliged to attend every activity or discussion group, but we were delighted that most
participants did attend all sessions.
This proved a very successful weekend finishing with the emergence of thirteen excellent
leaders willing to help with the next part of the Camp.
Main Camp - Sunday to Thursday
On Sunday afternoon we all met at the Waikanae
Christian Holiday Park where last years Camp was held.
As is usual with our Camps, the programme included a mixture of indoor and outdoor
activities, with the Wellington Carnival Street Band entertaining us on Monday night and
Mr Fungus the clown on Tuesday night. The participants had the opportunity to experience a
flying fox, rafting, abseiling, rock climbing, and a mud slide. On our last full day at
the Camp we had a picnic at the beach as the weather was just so beautiful and hot.
We facilitated many discussion on stress and ways of
coping with stress , we told our stories, we talked about and shared our knowledge on
Huntingtons Disease, we put down on paper what Huntingtons meant to us, and
drew on pillow slips what the Camp meant to us. On the last evening the campers
entertained us - a wonderful way to celebrate the finish of our fifth camp and according
to everyone the BEST yet! We had a large "birthday" cake with "No
5" written on it, to help us celebrate such an important occasion.
The last morning saw the usual presentation of certificates and affirmation posters,
exchanging of addresses and phone numbers, tears and more tears and the usual rush to get
away to catch planes and buses.
Towards the end of the Camp, the participants began talking about the possibility of a
Camp motto. They came up with one which they will think about during the next twelve
months and make a decision on at the camp in 1999.
We are delighted that the participants are taking more interest in, and responsibility
for, the planning, organization, and the on-going success of future Camps.
The Camp motto the campers are considering is:
We can and we will try
EVALUATION OF THE CAMP
The participants at the Camp were asked to fill in a daily evaluation form at the end of the formal programme each day. Each participant took this process seriously and for this we thank them. Information from the evaluation forms will be used to plan the next camp.
Evaluation of the Weekend Camp for those 18-25 years.
There is no doubt that the weekend Camp for the
older participants was very popular and successful. The venue with the rope courses was a
great asset and helped cement the trust between the campers. The majority of the
participants said that discussions on Huntingtons Disease and other discussion
groups were excellent and helpful. There was very positive feedback about the planning
sessions for the second part of the Camp. They enjoyed helping plan for the second part of
the Camp and looked forward to the leadership role they would play. Most felt that the
amount of organized activities was just right, but half of the participants still
commented that they would have appreciated more free time. This resulted in some of the
participants suggesting that the next Camp for older participants should be longer,
possibly by one day.
All the participants said they enjoyed the weekend and that it should take place again
next year with the majority agreeing that the age of 18-25 should remain, but several
participants felt the age limit should be negotiable.
When asked what they enjoyed most about the Camp they commented that they had enjoyed
talking to each other and doing activities together as well as watching people grow
closer. They also enjoyed the challenge of the rope course.
Evaluation of the Camp for those 10-25years.
According to the comments made in the evaluation forms, this part of the Camp was also a great success. The participants rated the introductions and activities on the first evening as "Good", many saying how good it was to see everyone again.
The outdoor activities were very popular especially the mudslide, rafting and the evening orienteering activity. Many commented that the day spent at the river taking part in rock climbing, rafting and abseiling could have been offered over several days so they would not have had to rush through many of the activities. The Wellington Carnival Street Band and Mr Fungus the clown were very popular, but the most popular evening entertainment was the concert put on by the campers themselves. Not only did the concert rate highly but they commented on how much they enjoyed the preparation for the concert.
The campers enjoyed writing their stories, painting their pillow slips and receiving their certificates on the last day. The majority of campers found the discussions on Huntingtons excellent and the amount of activities just right, having said that, some commented that they would have liked more free time.
The Camp rules were found to be fair and reasonable and they felt that the age range should continue to be between 10 and 25 years. All campers enjoyed the Camp and felt it should take place again next year, with most of the campers saying that they would attend the next Camp in 1999.
Here are some of the comments made by the participants when asked what they enjoyed the most about the Camp:
talking to people and getting to know them.
I found this Camp was very good because I had never really talked about HD to friends because they didnt understand.
I have made friends very easily, some very close, we all understand.talking about HD.
meeting others who understand and are going through the same thing.rafting, and abseiling.
The best experience in the world and I hope to be back next year.
The Camp is and should be utmost on the agenda each year..........fantastic fun and learning.
I certainly learnt more about HD and I will always try to learn more.people gelled better this year. There was more love, more support and more people to listen to me.
CONCLUSIONS
The Camp was successful and all the objectives were met.
The young people left the Camp more confident, with an increased knowledge of Huntington's Disease, and with a well established support network which I hope will continue for many years to come.
These Camps must continue to be an annual event.
Outdoor activities for such a Camp are essential and must be continued.
I believe that a Recreation Coordinator such as David should be contracted once again to organize and facilitate the outdoor activities. This position is an important one, contributing to the success, safety, and smooth running of the Camp.
I believe that a facilitator/counsellor such as Ann-Marie should be contracted again to work with the young people. Once again, Ann-Marie's input into the camp was invaluable; the time she spent on preparation for the Camp and her wonderful interaction with the campers and helpers was a major contribution to the camp's success.
The next Camp will be held from 9-11 April 1999 for those 18-25 years old and from 11-15 1999 for those 12-25 years old.
The 1999 Camp will once again be held at the Waikanae Christian Holiday Park.The Wellington Association should begin fund-raising immediately to ensure that there will be a 1999 Camp
Those wishing to attend the 1999 Camp must be 12 - 25 years old.
ACKNOWLEDGEMENTS
My sincere thanks to all those who helped
make this Camp possible - to those who helped us financially, to those who gave us moral
support, and to those who gave up their time to help at the Camp.
A very special thanks must go to Ann-Marie Stapp and David Clegg for
their dedication.
My thanks also to all the campers who got into the spirit of the Camp
right away and who participated fully and sincerely in all the activities. As always, I
really enjoyed meeting you all and sharing the few days with you.
Before leaving for home, David Clegg taught us a song which I believe
epitomizes what we learnt and what the Camp stands for.
Dont let anyone ever tell you that youre anything less than
beautiful;
Dont let anyone ever tell you that you are less than whole;
Dont let anyone ever tell you, your being is less than a miracle;
How deeply were connected soul to soul;
How deeply were connected soul to soul.
Dorothy Tortell
Social Worker