Is it really only a few weeks to Christmas???
I remember this time last year being house bound but grateful that Declan survived his surgery. Thankfully a year down the line he has made some real improvements from his spinal operation and is managing to stay in his wheelchair for most of the day. We are looking forward to Christmas so much this year, for us, having all the family around is by far the best part of Christmas. We are such a close family, my brothers and sister are so special in Declan’s life and really provide him with the essential love that keeps him going. This year we have another member to the Christmas family table. My brother Andy got married in October to a lovely lady called Stacey, so Declan will also have his new auntie to play silly games with him this year.
We are still fighting for the house to be adapted, however as the grant application states that you have to be in the property for over five years and Duchennes unfortunately takes many boys lives before they turn twenty, I think that we will never win this fight. It is such a shame that in this instance quantity means more than?quality.
Although this is Declan’s diary, I would really like to mention a charity event that I went to in November for the ‘Emma and Hope foundation’. I had the privilege of meeting the founder, Neil, four years ago when his wife and daughter were sadly killed in a car accident, and their ashes are buried not far from my Riley’s grave. I have seen Neil grow as a person and be an amazing dad to his son. Despite the every day struggles that he endures he and some close friends set up the ‘Emma and Hope foundation’ to help poorly children. The disco that I went to was amazing and was a real testament to how much people care and respect Neil and his passion to help others. Tragedy can often make good friends become strangers, I am so glad that these friends have all clubbed together with Neil to make the ‘Emma and Hope foundation’ a massive success and I wish them all the best with their plight.