Our aim is to provide a place for people in the UK to talk to other families within the UK who have had experiences with this condition.

We hope to be able to give you somewhere to talk & publish your feelings.

We know this can help some families get through this tough time, which is why we have created this site.

Please feel free to e-mail us at any time if you feel the website is missing anything.

Our help only comes from our own experiences, please note we are not medically trained therefore our views are our own.

 

We hope this website can be of help and comfort for you and your family.

Richard & Joanne