Declan’s Diary for June 2012

As you can see from the photograph above we are no longer house bound and celebrated by going to the Gadget show live at the NEC. Understandably Suzi, who is one of the presenters, took a shine to Declan and as well as this picture she gave him a kiss and told him what a pleasure it was to meet him. Things have improved so much since getting our new van, we can just get up and go like everyone else does. Just going to the lakes, which we used to take for granted, is an absolutely blessing. Declan is now able to spend up to eight hours in his chair although this is mainly reclined but is still a massive improvement. We saw his surgeon last week who said although Declan is still the way he should have been only a month after surgery, he is definitely making slow improvement and although may never fully recover, he hopes that there will be further improvements. Declan continues to have hydrotherapy every Monday at Rainbows children’s hospice which is the main way of helping with the damage caused by the surgery, but is now also attending school for just over two hours, four days a week. He is continuing to be incredibly courageous and inspires me every day.
On a very sad note, a good friend of ours, who we have been on holiday with, and who?also played a massive part of Declan deciding to have the spinal operation, passed away on the 12th May after developing a chest infection the day before. He was only 16 and was studying for his GCSE’s and?had been?in very good health. This has come as a real shock to all the Duchenne community, Thomas was an amazing young man who made everyone smile who had the privilege of meeting him. He made every day of his life count, but unfortunately didn’t get to fulfil some of his dreams due to the unpredictability of Duchennes. He has an older brother aged 19 who also suffers from DMD. My thoughts right now are with Thomas’s family and friends, who gave him a life worth living till the very end.