Declan’s Diary

I am writing this on the 3rd July, three years to the day since the diagnosis of Duchennes took over our life. I can still remember the words the doctor said to me when I asked if it would only cut his life to maybe 60. “I’m sorry Alexandra, and the life expectancy is only 18”. The words still send a cold shiver down my spine. At this I had to walk out of the consultant room; I saw a poem on the wall, which read as follows:

This poem, along with Declan’s smile, is what has helped me during these past three years and it is framed in my sitting room.

On 3rd June, Declan faced his hardest challenge yet. He was watching the world’s strongest child on TV in his room when he shouted, “Mum, they have just said that boys with Duchennes die young, is this true?” I cannot begin to explain the fear in his face or in by heart, I tried to shrug it off but he looked me in the eye and said, ”It’s true isn’t it?” All I could do was hold him as he screamed; luckily my sister was staying with us, so he had two people who adore him cuddling him. He asked several questions, such as why it kills boys at such a young age. I answered his questions as honestly as I could, and told him, that God thinks he’s too good for earth and I’m only allowed to borrow him because he is so special. I have to believe this and luckily Declan has found comfort in it. Since then Declan has shone out with bravery, he puts all adults who complain of headaches etc. to shame. He doesn’t often talk about it, but when he does, he talks about what a good time we’re going to have before he joins the other special angels.