Living with MAE

MAE can be a devastating diagnosis to come to terms with. We do not want to frighten parents new to MAE – if you have found this site then you’re probably already aware how complex MAE can be.

We DO however, want to share our experience in coming to terms with the diagnosis and how to look after your child to help fight this disorder. There are many anxieties about the uncertainties of what may lie ahead and how our child and family will cope with them. This section covers the day to day issues of learning to live with the “Beast” – and enjoying life to the full!¨