History of the New Zealand Williams Syndrome Association
By Kit Crawford
Our family emigrated to New Zealand from the U.K.in January 1967 when Gordon was two and a half. He was breastfed as a baby but at 7 months became seriously ill with severe vomiting and showing signs of kidney failure. We were fortunate in getting him into the Hammersmith Hospital in London where he was quickly diagnosed with Infantile Hypercalcaemia and a heart murmur. His calcium levels returned to normal when he was fed a low calcium milk called Locasol and his aortic stenosis was thought to be mild. So though behind with his milestones we hoped that he would gradually catch up and we entered him for primary school at 5 years of age. He soon fell behind his peers and our educational worries began.
An article in the New Zealand Woman’s Weekly appeared in 1982 which had a photo of a row of Gordon look-alikes and a description of the children’s problems, their friendly nature, etc. that fitted him to a tee.
So it was then we first heard of Jennifer Burson whose daughter Holly had high calcium levels as a baby and had recently formed the Hypercalcaemia Parent Support Group. She had already held the first meeting in Hastings attended by interested doctors.
In March 1984 a further meeting was held in Auckland at which Dr. Pat Clarkson, Cardiologist at Greenlane Hospital, was the speaker and it was at this meeting that we heard about Dr. Williams and of his research conducted at Greenlane Hospital for the first time. The heart symptoms and facial characteristics together with their friendly natures, slow to reach milestones made the children described in his published paper in 1961 sound incredibly similar to our group, though high calcium levels weren’t mentioned.
Jennifer by this time was in touch with the Infantile Hypercalcaemia Foundation in England which Lady Cynthia Cooper and her husband Sir George Cooper had founded after locating other families with children who had the same diagnosis as their daughter Clare. Cynthia had immediately set about finding specialists interested in the Syndrome and by 1984 the Foundation had already formed a Professional Advisory Board composed of Health and Educational professionals, one of whom was Dr. Neil Martin who had recently published a paper on the research he had undertaken on outcomes for children and young adults who had had Infantile Hypercalcaemia. It was decided at this meeting in Auckland that our group would raise the money to bring Dr. Martin to New Zealand. So Dr. Neil Martin came in November that year and spoke at meetings with both Drs. and parents in Auckland Wellington and Christchurch.
Not long after this big effort Jennifer became ill and the group she had started ceased to exist.
It was at this stage that I began to receive magazines from newly formed Parent Support groups not only from the Foundation in the UK and the USA but I was also receiving newsletters from Canada, Germany and support groups in New South Wales, Victoria and Western Australia. The Syndrome was increasingly being named “Williams”, and in the case of Europe, Williams Beuren Syndrome after a Dr.Beuren who had also had a research paper published. Internationally the two syndromes, Infantile Hypercalcaemia and Williams Syndrome, were being gradually recognised as actually the same condition with high calcium levels being found in some but not all the affected people.
Receiving all this information made me very aware that parents in New Zealand were missing out as I had no means of passing this growing knowledge on as the Association we had no longer existed. In 1989 my son-in-law emigrated to NZ and got a job with a photocopying firm. His firm kindly agreed to allow me to photocopy for free, which meant I could set about getting in touch with previous members after the 4 to 5 year lapse. Quite a few of the original group joined our newly formed Association which now went under the name of New Zealand Williams Syndrome Association.
About this time the Foundation in England made a 15 minute video about Infantile Hypercalcaemia/Williams Syndrome with the intention of helping to publicize the Syndrome and by so doing increase the chances of diagnosis. The Foundation in UK kindly allowed us to make copies and to use the video in New Zealand. We had further publicity at the beginning of 1990 with another article in the NZ Woman’s Weekly about our new Support Group and that also described Williams Syndrome characteristics. It was through this article that Sandra and Martin Paterson recognised how it fitted Sam’s problems and joined the Association.
With a group of Auckland parents we held stalls at the Avondale Sunday Markets and garage sales in New Lynn and Blockhouse Bay to raise money to cover the cost of newsletters and to hold our first meeting held at CCS in March 1990, chaired by Cleone Blomfield. Here we had speakers such as our then Medical Advisor Dr. Aftimos the Paediatrician. Mrs. Yvonne Kennedy from SPELD spoke on what could be done to help children’s learning abilities at home. The international magazines we held on Williams Syndrome were displayed.
I came across the services of Parent and Family Resource Centre, then based at Green Lane Hospital and from then on they became a wonderful fount of information and help for our newly formed group. Even typing out the newsletters for me as this was before computers had become commonplace and I had never at that stage taught myself to type. Through PFRC we were able to display our posters etc. at the Expos for support groups which were, in those years, held first at Greenlane Hospital and later at Middlemore and Starship. These were invaluable in informing medical staff of one of the lesser known syndromes and also for establishing useful networks in the field of disability. Our posters in particular were composed of montages of photographs of our children and clearly demonstrated the similarities of their facial features.
International support groups for Williams especially in the UK were most generous in allowing us to use their literature and I made a beginning in putting together a “Library of Information” not only to help parents learn more about it but in providing resources whereby they could help their children overcome some of their difficulties.
The UK put out a series of Guidelines for Parents, another for Teachers of Children with the Syndrome and finally for Employers and Supervisors of Adults, and allowed us to copy these with proper acknowledgements of course, and we saw that our parents had access to a plentiful supply. Information for GP’s with a child in their practice was another useful booklet from the UK that AMP printed for our use for free, and at the same time they printed our first brochure without a charge.
In 1990 my husband Keith who was a GP in New Lynn and I were able to go to the Family Convention for Williams Syndrome held that year in Boston Massachusetts. This was a revelation for us to meet so many families with Williams, children and adults. We attended as many discussions, work shops and talks on a variety of aspects as we could, learning a lot and buying informative books to add to our library that could then be borrowed by our parents.
Towards the end of 1990 the Cooper family from England who had instigated the first support group in the world for WS, visited us in NZ and stayed with us with their WS daughter Clare. We arranged for a “Meet-Our-Parents Night” at Green Bay Community Centre in West Auckland and they showed us videos of the growth of the Foundation in Britain since its inception 10 years before. The Coopers then went on to Wellington where they stayed with Peter and Cleone Blomfield whose son Guy also had WS. The Wellington meeting was held in the offices of Peter Blomfield who was Chairman of the Meat Board at the time.
In the summer of 1991 TV cameras and a journalist attended our Auckland picnic resulting in a segment about Williams Syndrome on the Holmes Show. This publicity was great and ended with us doubling our membership after these new members had obtained a proper diagnosis. At this stage I was editing four newsletters a year. These were copied for us by Copy Solutions in New Lynn at a discounted price and sent to members on our mailing list and other interested parties and also to overseas Support Groups. They in turn would send us theirs. The American one was called “Heart to Heart”; the Canadians called theirs “Just CAWS” (Canadian Association for Williams Syndrome). The German one was “Umschau” and also there were magazines from Britain and assorted ones from Australia.
I was also acting as Treasurer at the time, the Committee being scattered throughout New Zealand, was mainly composed of parents who had agreed to act as Regional Co-ordinators for the families in their areas. This became an important role as it was an early opportunity to make personal contact with new families by someone living in their region either by a visit or by telephone. It also meant we had someone in each region to hopefully spread publicity, may be give a talk to Plunket or to their local school; organise an annual picnic for families in their area particularly in the main centres with maybe an occasional evening for parents with a speaker. Dr. Ross Nicholson did this a couple of times in the evenings for Auckland parents.
By now above all we needed to organise a means of getting together nationally at a meeting inclusive of the whole family ...parents, siblings and the individual who was born with Williams Syndrome. I thought Wanganui would be a good central place to hold our first Family Camp. I asked Pauline Ayres if she could find a suitable venue for us and at Labour Weekend 1992 we converged on Green Pastures Christian Camp near Wanganui, a lovely spot with a lake and a flying fox over the lake. Fully catered for, we made our first tentative steps towards what has become a much anticipated 2 yearly event.
Each camp starting with Wanganui has had the good fortune of Lottery Welfare support which by keeping costs down makes attendance affordable and by meeting others often for the first time, alleviates the sense of isolation many feel with the diagnosis of a rare syndrome. It was at this camp that a vote was taken for a logo suitable for our Association. This was won by Richard Gifford depicting supporting hands in the shape of a W which is still our logo today. Now-a-days families from Invercargill to the Hokianga Harbour come to the camps held each time in different parts of New Zealand, and at these we have an opportunity to hold our biennial meetings.
1993 saw the first of our submissions as an Association when I heard from a family with a baby with Hypercalcaemia and they told me they could no longer get funding for the vital low calcium milk called Locasol for their baby. The submission I sent on behalf of the Association was backed by several Paediatricians and the Diet Department at Starship. The funding was restored.
There have been a number of occasions when a submission has been needed. “Tomorrow’s Schools” was one when I wrote an appeal regarding the importance of a Teacher Aide if our children were to meet with success in their classes especially in the early years. At other times appeals for help from parents regarding such problems as delaying moves to High School or Intermediate has led to a letter from us stating it would be in the child’s best interests to delay the move for a year until the child reached a greater level of maturity in order to cope. Many authorities are ignorant of the characteristics of this rare syndrome.
Dr. Ross Nicholson who had had a paper on WS adults published in a Medical Journal came to Auckland from Perth in Western Australia and agreed to become our new Medical Advisor for the Association when Dr. Aftimos went overseas.
1994 was a busy year. Keith and I went to another Williams Conference in San Diego. Keith first attending the Medical side of it and later we both were at the Family Convention. Here we learnt about the latest research whereby one of the genes for elastin was found to have been deleted on Chromosome 7 and was part of the answer as to the cause of Williams Syndrome. This had been identified in the States by Dr. Colleen Morris. We heard about the blood test that could pin point the missing gene, the FISH test (Fluorescence in situ Hybridization).
We went on to Holland after the convention in the USA. Here we were asked by the Clinical Geneticist at the University of Maastricht, a friend of Til Carati’s, to attend a parent meeting and to describe what we had learnt in San Diego.
On our return to New Zealand the next family camp was planned for the Auckland region. This took place at Peter Snell Camp on the Whangaparaoa Peninsula over Labour Weekend, October 1994. This camp began with a near disaster fortunately averted by Til Carati. With so much on my mind I quite forgot to pick up the cutlery which we had to hire from a firm in New Lynn. Til rose to the occasion and drove all the way back from the Whangaparaoa through the holiday traffic on the Friday night to collect the knives and forks so there was no need to eat with our fingers after all!
Two things of importance happened at the AGM. One was Eric Brakenrig was elected President of our Association. His daughter Heather, along with Eveline Carati, was included in the initial research conducted by Dr. JCP Williams in 1961. From my point of view I found a Mum willing to take on the position of Librarian and so Caroline Holmes went off with our collection of books and papers, videos and tapes to Wellington. Dr. Ross Nicholson came from Auckland to speak to us and explain the new genetic findings in the USA.
Terry Masters, Til Carati and I continued holding 2 or 3 garage sales each year and sometimes stalls at local markets, these augmented our income, which otherwise depended on membership fees which were very modest, many families generously adding donations. Raffles at our family camps helped too.
The main centres also continued with the tradition of holding a family picnic once a year. Terry Masters was the Auckland Co-ordinator and organised these locally. Point Erin Pools was a popular central place which we often used, marking our position with balloons, BYO picnic but with sausages provided and cooked on the BBQ. What with egg and spoon races, swimming and if it was Easter time, Easter egg hunts they were enjoyed by all. An opportunity too to display our posters and brochures, which helped with publicity.
It was now becoming increasingly urgent that we should become recognised as a viable charitable organisation, so with this in view Eric Brakenrig and I consulted a Glen Eden Barrister, Greg Presland, who did the necessary paperwork for us to obtain a Deed of Trust. This was signed on 6th. July 1996 opening the way for us to claim tax free interest on any investments held in the bank by the NZWSA. Donations too of more than $5.00 could be claimed as tax free from the IRD. Also, it was becoming a necessity to have this status in order to apply for funding from, for instance, Lottery Welfare. On 3rd. July 1998 Terry Masters joined Eric and myself as a third Trustee.
By 1997 we were due to have another family camp and this time it was held at Teapot Valley near Nelson under the watchful eye of Jude and Roger Sonneland who provided a range of exciting things to do in this peaceful environment. The meeting at this camp brought some changes. Louise Smith from Christchurch had agreed to take over from me and became our National Co-ordinator with the responsibility of producing the newsletters.
I agreed to see to the printing of a new brochure through the kind auspices of AMP who did it again for free for us. It was important to do this as our previous brochure had no mention of the genetic cause of the syndrome which had been discovered since that brochure was printed. We had the advice of our medical advisor Dr. Ross Nicholson for the wording of this and accuracy. We selected photos showing the typical facial features of Williams Syndrome at varying ages, boys and girls.
Louise Smith and Wendy Tunley organised the camp in 1999, this one in Paraparaumu. The Geneticist from Wellington was one of our speakers. Our President Eric Brakenrig had sadly died the previous year, and I was elected President at this meeting. Terry and I continued in our role as the remaining Trustees.
In 2000 a further informative video was produced in the UK called “Williams Syndrome Williams People”. This video is divided into sections of interest to those dealing with diagnosis of infants, the Medical Profession, teachers of children with the Syndrome and one section about when people with Williams grow up. Copies of this are held in New Zealand courtesy of the Williams Foundation UK in DVD form.
2001 and we were back at Teapot Valley. Jenny McClintock agreed to take over the library from Caroline. She also served as Regional Co-ordinator for Christchurch.
It had become recognised that musicality is a strong feature of Williams Syndrome and at the 2001 camp Jude catered for this conjuring up a great selection of musical instruments to try out and have a go. She organised a concert given by our WS youngsters to showcase their prowess. Karaoke was introduced at the disco night at this camp. These nights are a popular feature of all our family camps and hugely and enthusiastically enjoyed! Music certainly has become an integral part of our camps with families like the Barnes and the Praats arriving with guitars and keyboards keen to make music!
In the year 2002 Louise Smith was suffering from a bout of ill health and was unable to continue as National Co-ordinator. All the boxes of Association business were sent back to me in Auckland and I took up the reins for another year when at the next family camp held at YMCA Centre in 2003 on the Whangaparaoa Jude Sonneland from French Pass took on the position, and a new Treasurer, David Slone, was appointed. Mandy Lindsay was at this stage the Co-ordinator for Auckland and was on the committee for organising this camp. A journalist from the NZ Woman’s Weekly came to the camp with a photographer to take pictures of our WS kids enjoying themselves. The resulting article caught the eye of Christine Fleming who wrote to ask how she could join with Justin. She later told Heather Bowker whom she knew, so her son Alan joined as well.
The last 10 years have flown by and as these years are really more recent history I will just touch briefly on some of the events and changes.
Subsequent camps have become more high powered with the co-ordinators concerned aided by a committee of local parents to share the load. They have become more in the nature of conferences than in the early days, but still retain the feeling of a family reunion with lots of interesting activities for all ages.
2005 saw the camp held in Christchurch with Jenny and Rod McClintock in charge. It was held at Blue Skies Conference and Training Centre. The camp opened with a cruise on a paddle steamer down the Kaiapoi River.
At the AGM Sandra Paterson took over the role of editing the newsletters. She already acted as Regional Co-ordinator for Dunedin and the far South. Jenny McClintock took on the job of finding funding for a more colourful and eye catching brochure and the responsibilities for distributing these, and Brenda and Dennis Gordon became our Librarians. They too served as Regional Co-ordinators for the Wellington region. Mao Vaireka agreed to look after our web-site, this was becoming a more and more vital means of information, and Mao continues to develop our site.
2007 we were in Wellington, the camp organised by the Gordon family at Akatarawera Valley Camp near Upper Hutt beside a beautiful river, where later we enjoyed wine and cheese and roasted marshmallows beside the campfire. A Bouncy Castle provided fun between the many activities and interesting speakers. Changes at this biennial meeting saw Jude stepping down as National Co-ordinator and Christina Stilwell taking on the position and MerriLynne Reardon replacing David Slone as Treasurer.
In September of 2007 Sandra Paterson and Jenny McClintock attended the Australian WS Conference at Macquarie University in Sydney where, as well as listening to a number of speakers, research among the people with WS was also being conducted. It was another step for us to make personal contact with our nearest WS neighbours.
A word about our own fund raising efforts here; As well as the many generous donations included by families with their annual subscriptions mentioned earlier, sterling efforts have been made over the years by putting on special events.
In 2003 Margaret Ngawaka and her family held a dinner at the Yacht Club at Port Fitz Roy, Great Barrier Island, which brought in much needed funds as that year Lottery Welfare had had to cut down on all funding as they were going through a bad patch. Thelma Smith gave a garden party at her home in Papakura, raising over eight hundred dollars. Briar Patchett spoke at this, telling everyone about growing up with Williams Syndrome. Heather Bowker raised over two thousand dollars for us through an evening of “Battens Up” in 2009, and in 2010 she and Christine Fleming did a wonderful job of putting on a fund raising Rock ‘n Roll night! More recently Christina Stilwell and her team have taken part in Marathons raising much needed extra funds. All of which enhance our capacity to provide for such good and affordable camps.
These days we have the help of John Sarah who with the assistance of our present Treasurer Denise Bray does wonders for us in his capacity of Fundraiser. Filling in complicated application forms for these is not a job for the faint hearted and John, by undertaking this task, makes a huge difference to our being able to continue with the main funding of our camps.
In 2008 there arose the necessity of our registering with the new Charities Commission. This David Slone successfully saw through to completion and we became “New Zealand Williams Syndrome Charitable Trust”.
Later in 2008 the Stilwell family went to the American convention and brought home a number of good resources, books for the library DVDs etc. These were shown by Christina in her presentation at the Whanau Hui held in Ngaruawahia in January 2009.
Three members were sadly missing at this camp as Eveline Andrews, Gordon Crawford and Queree O’Brien had all recently passed away. A beautiful Sunset Ceremony of Remembrance was held in which balloons were released to float away on the evening sky. But nothing will quell the exuberance of a Williams gathering for long and the usual fun activities, friendliness and interesting speakers, well supported raffle draws filled the three days. Dr. Ross Nicholson came from Auckland and spoke to parents on WS health, and “Elvis” came along to the Disco.
Kit handed in her resignation and Jude stepped in to become the new President. MerriLynn resigned as Treasurer and this was taken on by Denise Bray. Mandy Lindsay handed over the position of Auckland co-ordinator to Sandra Bojanich and Liz Montgomery and Jill Farr took on the Waikato Bay of Plenty region and in a very short space of time had organised a combined area family picnic for that year at Miranda Hot Springs in March.
2011 and the Paterson family brought us to “The Gathering of the Clans” in Dunedin, a very smart venue at a Private School Boarding Residence overlooking the city. The Pipes and Drums of Dunedin gave us a warm Scottish welcome. Dr. Antonios Chasouris a Clinical Psychologist with a special interest in WS gave a presentation and stayed with us for the weekend. The highlights of this camp were trips to Taiaroa Heads in 8 wheel Argus vehicles and especially the free helicopter rides offered by Graeme Gale and his team from Helicopters Otago, testing the nerves of the bravest of Williams people let alone their siblings and parents! The main change at this AGM was that Gina Walters took over the position of newsletter editor from Sandra Paterson.
Parent Support groups are accepted now as part of the disability scene whereas back in the 80’s they tended to be looked upon with suspicion by the professionals. Certainly where Williams Syndrome is concerned parents getting together world-wide has helped to present a more comprehensive knowledge of the syndrome. With so many people with the same diagnosis gathering together, it is easier to spot other shared characteristics as happened with hyperacusis, with 98% eventually being discovered as suffering from this.
Funding for research has been raised by many of the larger International Foundations who have now put the spotlight on many of the problems experienced by families both from the medical point of view and the educational. A widening knowledge of how our WS people learn and consequently better ways of teaching them has resulted. Raised awareness among professional people and the general public has increased the chances of early diagnosis too. Information I have from Cynthia Cooper’s “History of the Williams Syndrome Foundation” is that there are now 31 countries with WS organisations!
Getting together on a regular basis and receiving news through magazines and letters and of course now-a-days, the internet, chat-rooms and face book all have reduced the sense of isolation caused when a family is suddenly faced with the shock of hearing that their lovely new baby or problematic child has to face a life with a previously unheard of syndrome, but we also discover that many of these babies will go on to surprise us as they grow older, achieving unexpected goals. It is a joy to watch the little ones grow into kind and loving adults giving new parents an encouragement not necessarily found in “official literature” on the syndrome.
This is the story of how our group has developed between 1982 and 2011.