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New Zealand Williams Syndrome
Spring 2018 Newsletter

Hi <<First Name>>,

We've been enjoying some very lovely weather over the last couple of weeks (I won't mention the last few days though!) - most of the spring flowers are coming to an end, but the rhododendrons are putting on a fabulous show this year! The warm weather has really helped produce more blooms than usual, and if I do say so myself – our garden is looking delightful!

This newsletter contains a couple of great articles about the achievements of our members:

  • Robert Hopper – celebrating his 60th birthday.
  • Kelvin Skeats – being made an Honorary Member of the Cobden Volunteer Fire Brigade.
  • Tatiana Vaireka – trip to Japan with her school Kapa Haka group.

Our sincere condolences are extended to Christina Stilwell and family at the recent loss of Christina's brother. Our thoughts and prayers are with you all.

Included also is further information on the camp at Living Springs, Christchurch, from Friday, 25 January to lunchtime Monday, 28 January 2019.

Plenty of time to relax and enjoy our kids as well as the city of Christchurch. Please send in the attached camp registration form as soon as possible.

Assoc. Prof. Melanie Porter from Australia will again be at camp to speak as well as collect research data on our WS kids for those who wish to participate. She will be accompanied by Jess a PhD student who will present her work on pre-school children with WS.

We are lucky to have DJ Steve (alias Georgia Strangman's dad) at the camp. He has requested people choose a couple of songs they would love to hear/dance to – there is now a space for this on the registration form. For those who have already sent in their forms please email Trish Hastie at

Fundraising for the camp is coming along. Trish has written about her son Bob's mufti day at school which raised $521. Also, their friend donated $950 from a charity boxing match, which he won thank goodness!

Brilliant work – thank you.

Christina and her son George are planning on running the Queenstown Half Marathon on 17 November and you can sponsor them on their facebook page "George Stilwell-Running for Williams Syndrome" and click the "givealittle" links


Happy reading,

Sandra Paterson - Editor
19 Skibo St, Kew, Dunedin
Phone: (03) 4879 056

Tatiana's Kapa haka group

In September Tatiana had the opportunity to travel to Japan with her Kapa Haka Group - Te Tira Whakaau for a cultural exchange programme. She had practiced for 6 months with the group after school over the weekends.

Once we arrived in Tokyo we were greeted one of the schools that hosted us where some of the students were home-stayed.

We made contact with the Japan Williams Syndrome Support Group before our travels and messaged Chisoki, a mother who is one of the main organisers of the support group. Chisoki's daughter, Sonoko and her mum organised for us to meet with them and 11 families from Tokyo Williams Syndrome support group. 

They setup the hall into a party theme and then we all shared performances, with Tatiana and Lania performing a poi and action song to the group. 

We were treated with song and dance from members of the group which was awesome and participated in a music workshop. We shared stories and learnt that the same struggles exist in Japan for learning support and health support like in New Zealand. 

At the end of the party the children exchanged their favourite sweets with each other.

Tatiana with members of the Japanese Williams Syndrome support group in Tokyo.
During the rest of the trip the group visited Disneyland together in Tokyo. They also performed at 4 schools, 2 performance halls, a rest home and a shopping mall. The shopping mall was setup for a New Zealand information day. The group performed 4 times that day and had workshops setup for making poi and playing Maori games. The Japanese people really enjoyed the performances and wanted photos with the all the performers.

The group were treated to some host school activities like confectionary classes where they made Japanese sweets, a calligraphy class, and a tea making ceremony.

Tatiana really enjoyed the trip and is currently learning Japanese at school. The group hopes to return to Japan in 2020 for the olympics.
Cooking lessons with Izuka high school students
Robert's 60th Birthday
Congratulations to Robert Hopper, from Whangarei, who turned 60 on the 18th of April this year. As Robert is quite frail now, his birthday celebrations were held over 3 days, as one thing a week was all he could cope with. See photos below! Although Robert hasn't been to camp his mother Jan has, some may remember her from the Auckland camp.

Jan writes how incredibly proud she is of what Robert's achieved over the years, especially his overseas trips:
  • 6 weeks “Golden Age” trip to Canada and across to Montreal
  • Trip to LA, Disneyland and Mexico with 2 others
  • 2 Trips to Fiji with family
  • Trip to Sydney and Brisbane to see Phantom of the Opera
  • Trip to Rarotonga with old school friend
  • Many trips within NZ especially with Ngati Poneka and Kapa Haka group
Only regret – not getting to see the New York skyline in person
Celebration No. 1 - Robert in Helicopter for flight over Whangarei
Celebration No. 2 – at Idea Services home   Celebration No. 3 – at family home

Honorary Membership - Kelvin Skeats
Kelvin Skeats is 46 years old and lives in Cobden, West Coast, South Island, in an IHC flat with one other person. For the last 30 years Kelvin has been involved with the Cobden Volunteer Fire Brigade. His cousin Gavin takes him to the meetings and the Brigade are like another family for him.

Pam, Kelvin's mother, said they are so proud of Kelvin for receiving the rare Honorary Membership and praises the Brigade people for being so wonderful to him.

Read the Newspaper article here

WS Camp - 25/28 January

Come and enjoy these free Christchurch attractions on
Sunday 27 January when we take a bus ride into the city.

Download the camp registration form
Please get your registration forms in as soon as possible. We look forward to seeing you.
Bob's Camp Fundraising

Bob and his dad Josh organised a mufti day at West Rolleston School to raise funds for the Williams Syndrome national camp. Josh got along for a talk with the senior school and Bob enjoyed showing them a few Williams favourites including the vacuum cleaner and the dab! The senior students collected the money which came to a generous $521. Two of the students borrowed WS t.shirts from their friends, the Hodges family from Invercargill.

Gareth Bell, a friend of Bob’s, approached us about raising money for the Williams Syndrome national camp by entering a charity boxing event. We were relieved that Gareth won his fight and very grateful to receive $950 from his fundraising.

Living Springs Map

There is an indoor swimming pool, a go cart thing, mini golf, trampolines, tennis courts, bush walks, kids playground, rope swings and more onsite.
Getting to the campground
Living Springs is at least a 45 minute drive from Christchurch Airport. There will be vans available for transport from the airport to camp so please include your flight details on your registration form, or let me know when you have booked your flights.
Please ensure that you arrive at Christchurch airport before midday or we may not be able to provide you with transport to camp. Those driving to camp can arrive anytime from 10am on Friday, 25th of January.
Copyright © 2018 New Zealand WIlliams Syndrome Association, All rights reserved.

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