We came down to find he was hardly breathing, maybe once every minute. When I picked him up though, he started breathing properly again, although it was laboured. We decided to take him upstairs to sleep with us, and he spent the next few hours on my chest whilst I dozed, feeling him breathing against me. At some point Victoria took him and did the same. We then had him laying between us on the bed, and just talked to him, telling him how brave he had been, how sorry we were that we couldn't fix him, how much we loved him and that it was okay for him to go. His breathing was down to once every 3 or 4 minutes, and at one point we thought he had stopped. But he took one last big breath, and we asked our other children to come in and say good bye to him. He died on Saturday 18th August surrounded by his family, hopefully in the knowledge that he was so loved, and would be so missed.