Declan’s Diary

October was a very exciting month for Declan, as his new friend Russell Howard invited him to go to the recording of ‘Russell Howard’s good news’ for his 14th birthday. We arrived in London and went straight to the waterside studio’s where Declan was treated like he was the celebrity. I was told by several members of the production team that Russell had not stopped talking about meeting Declan at the Well Child Awards and that he was totally inspired by him. It was fantastic watching the show and then going to chat to Russell in his dressing room afterwards. The following day which was Declan’s birthday we went with my sister to ‘Ripley’s believe it or not’, a popular London attraction, which was amazing as Declan loves weird and wonderful facts. On the way home before he fell asleep and started snoring he told me it was his best birthday ever.
We have now had the results of Declan’s sleep study and thankfully thy came back ‘normal’ which was a total relief. Unfortunately his recent heart check up wasn’t so positive as we were told that its lucky that Declan has already had his spinal surgery as his heart is now too weak. When we went a year ago we were told not to even sit down as things were fine so this came as a real shock. Declan is now on daily medication to help his heart.
We are still fighting with the safety aspects of the house. After contacting muscular dystrophy campaign they have instructed their solicitor to take on the fight as every day Declan is put in danger and if he had to be rushed into hospital, the hour it currently takes to get him out of the house is unacceptable and would quite possibly put his life at risk.
For me, right now, I just feel blessed to have him still with me. This time last year I wasn’t sure if he would live through the operation on his spine, or if I would get to celebrate another Christmas with him. A year down the line, although he still suffers from pain after the surgery he is very much still full of life and I am the luckiest mum in the world.