Addy’s condition is a fast thief. Our daughter is fading in front of our eyes. It feels like the two-year-old girl in the photos on my wall is not my child any more. To be honest, it feels like we need to have a funeral for one child and a celebration of a different child.

The life we imagined for Addy is different – those feelings of ‘I can’t wait to take her to ballet lessons and see if she enjoys it; I can’t wait to see her hold hands with her best little friends.’ Now we have a different child and we have to come to terms with that.

It’s a whole bag of loss and as time goes on there’s another thing that you lose. This horrible disease has stolen the Addy we knew and it does feel like grief for us.