As the parent of a child recently diagnosed with Prader-Willi syndrome, it’s quite likely that you will not have heard of Prader-Willi before because PWS is a rare disorder affecting approximately 1 in 16,000 births. Receiving new information about this complex syndrome can easily overwhelm. You may already have turned to Google for answers and discovered an abundance of information, much of which may never be relevant to your child and some of which may be out-of-date. As parents who have walked the same journey through diagnosis and beyond, we would like to tell you that the future is far more positive than it seems right now and you are definitely not alone.
Most of us clearly remember ‘Diagnosis Day’ as the day our dreams for our child changed. We have all grieved for the child we could have had and worried about a future that seemed daunting. Our lives have indeed followed a different path to the one we had imagined, but our new path has been equally full of happiness, blessings, achievements and fulfillment. We have discovered that our children who have PWS are not defined by their diagnosis – they are individuals who have brought us much joy, love, pride, and have empowered us with their determination.
It’s natural to feel that you must find out as much as you can about Prader-Willi syndrome so that you can be best prepared to support your child, but we would like to tell you (with the benefit of hindsight) that there is plenty of time to learn more as your child grows and that right now, it is important not to miss out on enjoying your beautiful baby, rather than worry about challenges that may or may not be a part of their future.
You will be told of the collection of symptoms that characterise this syndrome, but unfortunately, symptom lists do not include the many positive characteristics our children have: their perseverance, sense of humour, love of life, enthusiasm, and their cheerful, friendly and sociable nature. Our children may share some challenges, but their individual determination to overcome these will continue to surprise you. Our children may require some extra support and some things may take longer, but they will achieve goals, milestones and much more.
We would also like to tell you that with the advancement of knowledge, care and the availability of growth hormone treatment, the future is brighter today. We also believe that with the advancement of research, there is hope of more medicines becoming available in the future and several current trials are showing promising results. The PWSA(NZ) supports fundraising for research and the work of the Foundation for Prader-Willi Research. We can help to assist with any fundraising initiatives – involvement in raising funds for research can be a valuable, rewarding and fulfilling experience with its positive focus on eliminating challenges of PWS.
The PWSA(NZ) is primarily a parent support network and we are always happy to talk with new parents either by phone, email or meeting with you. We can also put you in touch with other parents in your area, or with other parents who have children of similar age. Our services are provided free of charge to families – please join us and we will post you a copy of our New Parent Pack.