We source the very best International knowledge on 22q and bring the relevant specialists here to give us the most accurate information and up-to-date research which in turn ensures that we have the knowledge we need to better the quality of our lives and that of our children. For us knowledge is power, without it our children can and do suffer needlessly and what hurts them hurts us.
Getting together as families is also important – it helps us to realise that we are not on our own and that we can support each other with the challenges that we face – we are our own most important resource!
Our funds to date have been spent on these events, yearly conferences and family days. We welcome feedback on these events. As we grow we hope to add more to our ‘doings’ and expand our services yet will always keep the focus on where it belongs – our children.
Our children are heroes. They are born with a chromosomal disorder that not too many people know about (including us!) which means that basically they grow up in a world surrounded by adults who do not understand them. Apart from their many medical problems, the neuro-cognitive profile of 22q is not very well recognised and this lack of awareness can and does cause untold misery and distress both to the children themselves and those involved in their care.
As parents therefore it is crucial that we have accurate information on 22q so that we can help give our children the best chance to reach their potential in life. Although we have some excellent professionals here in Ireland specific “syndrome knowledge” of 22q is very limited.