I have already filled out the National Conversation on Rare Diseases Survey. We do not have to shy away from speaking openly about our experiences of a rare disease.
Here is a short poem I wrote for other parents of children who have special educational needs and disabilities, and who advocate for their child/children.
I took my son out trick-or-treating this evening. My boyfriend bought my son a blue Halloween bucket for this year, which was much appreciated.
Having your own identity in life is incredibly important. … One way of having your own identity is through fashion.
It’s October, and my son had one wish this autumn holiday. He wanted to visit a pumpkin patch, so we did. We travelled close by to the Pumpkin Patch in Milton Keynes at Mount Mill Farm.