History of the group
Formed in 1992, the Cri du Chat Support Group of Australia has recently celebrated its 27st birthday and held its 23th annual general meeting.
At the time the group was formed, there was very limited knowledge amongst professionals about the syndrome and no network to support parents and relatives. The little information that was available to professionals was highly inaccurate. For example, early textbooks cited that children with Cri du Chat generally were born with heart defects and were likely to have a very short life span. We now know this to be untrue however, parents at the time, and up until very recently were told that there was little that could be done and that the prognosis was extremely poor. Evidence to the contrary is provided in the family stories on the CDC website site.
In 1976 Margarette Christie and her daughter Mindy (born 1971) and Janet Ryan and her daughter Jacinta (born 1975) met briefly at the Krongold Centre at Monash University, one of the first early intervention centres in Melbourne. They lost touch and in spite of Janet going on TV in an effort to find Margarette and Mindy, they did not meet again until 1992 at the first family picnic.
The first Australian paper on CDC by a parent
Nine years later, whilst studying at Monash University, Margarette was working with Professor Stewart Sykes, the same person who had initially put her and Janet Ryan together at the Krongold Centre. He suggested she work on an article with him, a case study of Mindy’s development, in order to get the message out to professionals that the syndrome was not necessarily as severe as the prevailing medical information indicated. This article was published in the Australian and New Zealand Journal of Developmental Disabilities in 1987 and highlighted the need for physicians, psychologists, other relevant professionals, teachers and parents to be aware of the developmental potential of home-reared children with the Cri du Chat and pursue a positive approach to educational and future programming and placement.
After publication, a mother from Canberra contacted Margarette and desperate to meet up with another parent, flew with her young baby to Melbourne for the day, to meet and talk with Margarette. Thus, in 15 years, Margarette had only met two other parents and seen one other child with the syndrome. She was determined that when she could, she would do something to help other parents, to make sure they were better informed than she had been and able to meet each other and share their experiences and expertise.
Forming the support group
Early in 1992 the first two members of the group, Margarette Christie and Wendy Craig, were both searching for other families with children with the syndrome. A caring worker at the Victorian State Government responsible for disability services put them in touch with one another. They subsequently talked, sent out the first newsletter (October 1992) and made the decision to get together with other families Wendy had found and a meeting was arranged. A group of 6 families went onto organise a picnic at Melbourne Zoo in November 1992 and the initial steps were taken towards the founding of a support group.
The first group of 6 families were Margarette and her daughter Mindy (born 1971), Janet Ryan and her daughter Jacinta (born 1975), Sue Green and her son Julyen (born 1985), Wendy and Roger Craig and their son Bradley (born 1989), Belinda and Graham Harrison and their daughter Mikyla (born 1987), Linda and Kevin Bull and their daughter Sasha (born 1988). These parents continued to meet annually as a formal group and in August 1996 became incorporated in Victoria as the Cri du Chat Support Group of Australia Inc and successfully obtained tax deductibility status.
Below is a photo from one of the early annual meetings held in 1993 at Jan Ryan’s house of the children mentioned above. From left to right – Mindy, Mikyla, Jacinta, Sasha’s twin sister, Bradley, Sasha, Janet (Jacinta’s mum) and Julyen.
And again a Melbourne meeting in 1993 held at Margarette Christie’s house. Adults pictured are Jan Ryan and Belinda Harrison with children Julyen, Jacinta, Bradley, Sasha and Mikyla.
Margarette in particular continued to take a lead role in outreaching to parents in other states, organising and attending family days in Melbourne, Sydney, Adelaide and Brisbane, distributing newsletters, speaking to parents, schools, community organisations, medical students and on radio also maintaining contact with families and organisations overseas. Wendy, as secretary, performed the essential work of organising members, mail-outs to hundreds of hospitals and doctors across Australia and handling the increasing number of parent contacts. Roger, Bradley’s father also ably handled our accounts as Treasurer.
Below is a photo of children at the first family day held in NSW in 1994. Pictured at the top of stairs is Arthur, with Monique and her sister Elizabeth behind, blonde Hanne and Brendon in the car.
Subsequent meetings were organised around the country.
South Australia 1994 with Andre pictured
Sydney 1995 with Hanne, Catherine, Monique and Arthur and parents
Queensland 1998 with Ranon pictured
The first Australian documentary on CDC
In 1997, Helen McGrath (mother of Hanne, born 1990) our former parent liaison person in Sydney made a fantastic 45-minute documentary about our children, the syndrome and what it is like to be given this diagnosis for your child. Five families, whose Cri du Chat children were around 9 years old, were interviewed, and their children filmed at home and at school. The video showed the range of the spectrum in a positive way. It was sold all over the world, used in teaching situations in schools, hospitals and universities, and used as a resource for teachers, researchers and students for many years. It is currently available here, streamed from YouTube.
Below is a photograph of Hanne, Sophie and Rachel who feature in the documentary.
Helen again offered her videoing skills to record the 2017 conference and put in substantial effort along with our NSW members in organising the hugely successful 2019 conference at Point Wolstoncroft. The video of the 2017 conference can also be viewed here.
Our first conference
The group held a conference in 1999 having an information day at The Murdoch Institute at the Royal Children’s Hospital and a family picnic at Melbourne Zoo. A second family information day was held at Westmead Hospital in Sydney. Professor Erik Niebuhr from Denmark was the guest speaker. He was one of the earliest researchers into the syndrome who discovered and described in his seminal 1978 research paper that CDC is an extremely variable condition ranging from very mild developmental delay to profound physical and intellectual disability and therefore stressing the need for early intervention to optimise outcomes for our children. At right is a picture of Professor Neibuhr ‘holding the baby’.
Below is a photo of the conference dinner with Professor Neibuhr held in Sydney 1999. You will notice there are 7 parents in attendance and we now have about 130 parents, friends and relatives regularly attend our biannual conferences.
A big thank you
We are indebted to our founders Margarette Christie, Wendy Craig and Jan Ryan who have been involved with group organisation since 1992. Margarette worked so tirelessly over many years particularly in writing the newsletter and organising state based meetings and Wendy Craig who took on the role of Secretary and kept all our correspondence, parent contacts and membership records up to date. Margarette, Wendy and Jan have retired from the Committee and we thank them for their work at the helm for so many years and acknowledge them as our life members.
Roger Craig another of our early members, continues to ably be on the Executive as Treasurer and I continue to be President.
In the near future, we plan to move from being incorporated in Victoria where under the rules only Victorian members can take on Executive positions to a different legal entity where members in other States can take on these roles.
Sue Green (President 1998-Current) with input from group ‘elders’
Margarette and Mindy at the 1992 group picnic
Jan and Jacinta at Jacinta’s 30th birthday 2006
Wendy and her partner Billy with son Bradley at the 2017 conference