Declan’s Diary September – October

Declan continues to be very brave despite the fact it seem like his world is falling apart at the moment. At the end of August we had a holiday in Norfolk for a week in fully adapted cottages with nine other families with boys who have Duchennes . We had an amazing time, although it was a real emotional rollercoaster, seeing boys still walking in that typical Duchenne style and boys who are a lot further down the line than Declan. For once Declan felt completely accepted. The most rewarding part of the trip for me was sharing knowledge and tips with the other parents, and having a few cheeky drinks in the evening. But more than that was on the third evening when Declan tried to ride a specially adapted bike and for the first time ever I watched him pedal away and feel the freedom of riding a bike, whilst the other boy who is still walking had a go in his electric chair. Myself and Michelle the other mother were in tears, both of joy and pain, the boys were so happy, Declan was so chuffed that he had ridden a bike and Dan was loving the independence of a electric wheelchair without worrying about the risk of falling. I have already put our names down for next year as this really was a holiday to remember. Over the summer holiday I have noticed a real decline in Declan’s upper body strength, just to brush his teeth or raise his arm is near impossible.
I have been told about a solution called ‘easy arms’ which help take some of the weight of the arms to enable easier movement. These cannot be purchased on the NHS so all the past funds for equipment will be paying for them. So many thanks to all whom donated in the past, your donations are really being well spent.

Declan is celebrating his 11th birthday on the 3rd of October, I pray he has many more, never take your children for granted as you really never know how long you have them for.