Prader-Willi Syndrome (PWS) is a complex medical condition that affects boys and girls equally and continues to affect them throughout their lives. People with Prader-Willi Syndrome have an obsession with food and eating (some from about age 2), poor muscle tone and balance, learning difficulties, lack of normal sexual development, emotional instability and lack of maturity. It has been estimated
that about 1 in 15,000 people from all races are born with PWS - it is not inherited in 99% of cases. Every child is an individual and not every person affected by the syndrome will have all of the characteristics. Early diagnosis gives the child a more positive start with early intervention and sensible eating plans. The first stage of PWS is characterised by low muscle tone and means that it will take longer than normal to reach developmental milestones. Early intervention in areas such as physiotherapy, speech therapy and occupational therapy is very important. The second stage of the syndrome usually occurs from around 2 years, or in some cases later. Although diet remains the same, weight will start to balloon. This will be accompanied by a compulsion to eat and an obsession with food. If nothing is done to manage diet, or restrict food, then serious weight gain that can result in life threatening obesity will occur in 95% of cases. Early intervention means this outcome is no longer inevitable. Since our daughter was diagnosed with Prada-Willi Syndrome our world has been turned upside down; life as we knew, hoped and dreamed has forever changed. As stated above it is not an inherited disorder so we were surprised by the diagnosis. Like anyone, we struggled, and still do, with the question, ‘Why us?‘ Through this tough season we believe it to be our mandate to help families like us find hope in the future. As a family of a newly diagnosed child we have only experienced a little of how our life has/will change; the never ending doctor’s appointments, speech therapy, daily physiotherapies and the emotional roller coaster. Later on in life it will mean our daughter cannot have access to places food is stored, altering the family eating program, exercise will be extremely important and she may require a specialized education program. Despite the vast number of difficult issues these children have, they also have positive features. They are friendly and loving individuals who care about others and the world around them. They also want to make a positive contribution to their community. They often have a wonderful sense of humor and can be good at word games, jigsaw puzzles and computer games. They can be very persistent at a task, continuing when many others would have given up, and they usually win through in the end. And, as each is an individual, he or she will have their own individual talents as well. The Australian Association is run solely by volunteers who give their time, and often resources, freely, to help all those affected by Prader-Willi Syndrome. At the national level, funding comes from a small levy on the State Associations and donations. The Association has a variety of activities that it would like to undertake which require funding. These range from administrative costs that support the lobbying of Government for better services, to the preparation and dissemination of educational materials, research for treatment and support to families in rural and remote areas. Members would like to do more, such as provide specialist training for Australian professionals, but this requires funding. Please consider donating through our ‘Tips for Kids‘ tip jars at participating businesses throughout Australia or online directly. ‘Tips for Kids‘ proudly partners with the Australian Prader-Willi Syndrome Association. All contributions are tax deductible and are gratefully received.
