Dougie Mac children’s hospice, I went on Saturday, Me Amazing Grace Davenport took it all in my stride, the staff and other children were amazing. 

But mummy is having a struggle since visiting, she feels like she has let me down as her mummy, I have a life limiting syndrome and it really has made mummy and daddy realise how precious life is and me.

Mummy and daddy think every day is this the last one, mummy and daddy can’t explain how hard they work to keep me well, there is only a few people that realise what they do each day, the mental struggles they have, the upsetting times, the joy-full times the family moments. 

Walking round the hospice was an emotional experience but I know it will help us as a family, they will be there for grace right till the end.

If mummy or daddy don’t text, phone or email straight back in a timely manner please have patience with them, mummy is having a hard and struggling time, but doesn’t stop her putting me and my brother first before other things.