The Huntington's Scene In  New Zealand

Site Maintained by

Graham Taylor

Articles taken from the March 2002  Huntington's News. The Quarterly Newsletter of the Huntington's Decease Associations of New Zealand

THE ANNUAL YOUNG PEOPLE’S CAMP 2002

 The ninth annual Young People’s Camp organized by the Huntington’s Disease Association (Wellington)  was held from 1-6 January at the Outdoor Pursuits Centre of New Zealand (OPC).  The Centre is situated on the western side of Tongariro National Park in the Central Plateau of the North Island.  This was a wonderful venue to hold such a Camp with the location so close to the three volcanoes, Ruapehu, Ngauruhoe and Tongariro all of which provided a beautiful and serene backdrop to very good accommodation facilities and endless possibilities of exciting outdoor activities. 

 A total of twelve young people, eight of whom had attended previous Camps, joined us at the OPC.  Participants came from, Christchurch, Hokitika, Wellington, Wairarapa, Wanganui Taupo, Napier, with ages ranging from 12 to 24 years old.   In spite of the range in ages, everyone got on so well and after the first few days of bonding with each other became a very supportive group .

 The Camp’s Objectives were, for the young people...

·        to meet others from similar Huntington's background and circumstances;

·        to share information and experiences about Huntington's Disease;

·        to support each other and by doing so, develop a mutual support network;

·        to have fun.

 As in previous years, there was a mixture of indoor and outdoor activities and discussion sessions on all aspects of Huntington’s Disease.   The participants had an opportunity to take up the challenges of a high rope course, making their own raft and then sailing it down the Tongariro River, and climbing up to the snow on Mount Ruapehu. The snow was more inviting than the further walk to the  Crater lake, as several participants had not been in a decent amount of snow before .  We designed a banner for use at the next HD conference, some excellent art work is to be seen in this along with a visual display of participants feelings and thoughts relating to HD

 Each evening the group had discussions on various aspects of Huntington’s Disease. Many young people were very well informed about the basics of HD due to education and sharing at other camps and reading the Wellington Association publication  “Huntington’s and Me - A guide for young people.” (A book I could have done with when I learned about HD in the family!) The group shared through talking, drawing, sculpture, and writing how HD has affected them as they have been growing up. We also talked about genetic testing and the young peoples’ feelings on how they could approach the future positively. Much support and education also took place in small informal groups as people supported each other in their own situation.

 The Camp was a great success and all the objectives were met.   Campers met other young people in the same situation and shared information on Huntington’s Disease.  They formed part of a group where those around them understood what they were going through and provided mutual support.  They overcame feelings of isolation and left the Camp more confident and with an increased knowledge of Huntington's Disease.  They returned home more resilient and with a better understanding of their family member with HD.  The support network which operates between Camps was strengthened.

 The Association is deeply grateful to the following who provided generous financial support which helped to make this Camp possible : City of Christchurch Triathlon, Grand Lodge of New Zealand Freemasons, Hawkes Bay Support Group, New Zealand Community Trust/Ten Pin Bowling Petone.

 My thanks to the staff at the OPC who provided an exciting and safe programme with great sensitivity.

 I appreciated support and energy from Mark Chappell my co-facilitator. I enjoyed working with Mark and feel we fulfilled a complimentary role providing a safe and fun environment for the participants. Thanks also to his family who made it possible for him to attend the Camp.

 My thanks to all the Campers who got into the spirit of the Camp and who participated fully and sincerely in all the activities.  I really enjoyed seeing those of you I have shared camps with before and meeting new people.

 Having had 2 years off from being a helper at camp it was a challenge to come back without Dorothy being there and being a facilitator. She was not far away though as I had instructions to phone often and tell her how we were going. I did use a bit of her wisdom when I felt unsure about what I was doing. With her usual supportive attitude she gave some pointers and said we were doing fine!

 It was excellent to have the young peoples’ book to refer to in order to give well-worded answers to questions. My background is in Nursing and I like to have a text to refer to.

 As usual I stayed away from the rafting! I did manage a go on the rock climbing wall and the walk up the mountain. It was great seeing the group come back to the lodge after having so much fun Mountain biking. Mark looked much the expert there with his cycling top and shorts also the real Cyclist’s shoes!

 Thanks to the Association for inviting me to have a part in the camp, all in all I had fun. I enjoyed learning more from the young people and sharing some of my own relevant experiences with individuals and the formal groups. I would be happy to be involved again

 Wendy Burne

 

 

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