I was rudely woken on Sunday the 25th of May by Lily hitting me on the head with her fist. My dad and husband had been watching her and said it was very funny. As you can imagine we could not believe that she had survived the night, let alone be full of frolic again. She really was the most inspiring and amazing little lady. It didn't take long though for the apnoea's to start again. At 11 am she had her first of the day. Today though they were different and I knew there was no way she could continue to cope. As the day progressed, they became longer and closer together, sometimes lasting 10 to 15 minutes.

Our families were with us all day. I found her apnoea's hard so I didn't pass her over to anyone, except my husband, all day. When she started one I would put her into her favourite position on my chest. It was a long day and we were emotionally drained as well as physically. I can only imagine how little Lily felt. She was such a small person, to have to suffer these things. But we were reassured through this whole process that she would not be in any pain. She was still receiving her Oramorph every 4 hours. This gave us comfort knowing for definite that she would not be in pain.