Dear New Parent,
Congratulations on the birth of your baby! We are delighted that you have found us. Prader Willi Association Ireland (PWSAI) was founded by parents of children with Prader-Willi Syndrome (PWS) to provide support and advocate for people with PWS, their families and carers. As parents, we know what you are going through. We have been there ourselves. We have worked through the same process you are navigating now; the diagnosis, the grief, the fear and we know it can easily become overwhelming. If there is one thing we would like you to know, and truly believe, it is that there is hope, the future is not as you may be thinking. Our children are amazing and will lead more fulfilling lives than you might be imagining right now.
A word of caution and one which can be so hard to follow. Do not believe everything you read on the internet. A lot of information is outdated and does not consider the huge progress made in both medical treatment and early intervention services. Growth Hormone treatment alone has radically changed the prospects for children with PWS. Early Intervention Services now provide so much therapeutic support for us and our children that managing this Syndrome has changed dramatically. The future now holds so much potential, we want you to believe, like we do, that the sky is the limit!
You will see from the photos and videos on our website that our kids are amazing, like their peers; active, loving and full of life!
Helping you reach out..
We would like to take the first step in helping you reach out to other parents of children with PWS, because we recognise the value in a good support network. There are some fabulous Facebook Groups for parents and carers of children with PWS. Groups are private, some are split by age and offer a great resource for advice and information.
Linking with a Mentor. Let us connect you with a PWSAI Mentor, a parent who lives in Ireland, hopefully close to you. There is value in connecting with people who understand your situation and who are a little further into the journey.
To join a group, request to be linked with a PWS Mentor or receive the PWSAI Sensory and Welcome pack please fill out the New Diagnosis Form below.
Free Sensory and Welcome Pack
PWSAI see the value in sensory play and so have put together a sensory pack for all parents of newly diagnosed children. Below is a picture of a sensory pack (please note This pack is only to be used under supervision and individual items may change depending on supply). It contains toys which our kids loved and benefited from playing with. We hope you love them as much as we did!
For more information on sensory activities, click here