Wolf Hirschhorn Syndrome
Conference
On 18th & 19th of September 1999 for the first time in Australia the families with children affected by Wolf Hirschhorn Syndrome gathered in Melbourne to attend the Inaugural WHS Family Conference. Families flew and drove from all states except for W.A. and the A.C.T. Of the 28 Diagnosed cases in Australia that the Support Group knows of, 19 were able to attend.
After a brief welcome and some introductions, the conference got underway with a display of equipment and aids for the disabled accompanied by equipment reps and Robyn Potts, an occupational therapist from the Yooralla Society. The families soon began getting to get to know each other discussing different aids that they had tried, and which ones might be needed in the future.
Saturday afternoon the first of the formal sessions was with Dr John Rogers, a geneticist who now does grief counselling and Margaret Sahhar, a senior social worker, both from the Murdoch Institute. During the session we looked at the emotions and feelings felt when we discovered that our children were "different", as well as later when we are coping with the demands of caring for our children. Although slow to get started, people soon opened up as they could see that their feelings were not unlike those of the other parents and therefore not unusual. This proved to be very beneficial as they could see that the guilt that some had been feeling over their emotions was not justified.
Sunday morning we were fortunate to have Dr. Agnes Bankier, Senior Medical Geneticist from the Murdoch Institute to talk to us about the syndrome. She was able to go over what WHS is, how it happens, what causes it, as well as latest testing techniques and current research. We were also able to have a question and answer session, which provided the families with an opportunity to have explained to them, things that they had previously not fully understood.
Sunday afternoon Heather Leisis from The Association for Children With Disabilities spoke to us about services available to families and how to use then effectively, advocacy for your child and how as a parent you are the best judge of a child’s needs. As a parent, we the see whole picture and it is important to convey our feelings and opinions when dealing with service providers and health professionals.
Before the day was over we had a chance to sit down as a group and hold the first official meeting of the support group. In keeping with they way the support group is run, the meeting was an informal one with an opportunity to discuss the future of the support group and what the group’s aims and direction should be. We also discussed the next national conference and decided it should be held in two years time in another state – possibly in NSW.
We were lucky to be able to enlist the services of the Brotherhood of St.Laurence Craigieburn Family Day Care workers and volunteers from Interchange North West to care for our WHS children and their siblings.
On Saturday - Crazy Pete the Magician entertained the kids (and some adults) from 11:00 am and ended up staying well into the afternoon. McDonalds provided all the kids with a Happy Meal for lunch, then from 2:00 pm the rain stayed away long enough for a Mobile Animal Nursery in the playground and a wandering clown. Sunday - Red the clown entertained the kids in the morning with some balloon tying and other antics. After a party lunch, a jumping castle proved to be a bit hit with the siblings and the WHS kids alike.
Overall the conference was a huge success with all the families gaining from the experience in numerous ways. The organized sessions provided a great deal of information and addressed issues that had previously been left unattended with the informal group atmosphere lending itself to open questions and discussion. The opportunity to see all the children with their similarities and differences, and for the parents to hold individual discussions was a wonderful experience and has now paved the way for continuing contact between the families.