Declan’s Diary

The NEC in Birmingham is somewhere that Declan and I have visited several times, mainly for car events, however last week we attended our first Action Duchenne conference there. As you can imagine the disabled parking was full and with our large van merging among other vehicles that also needed wheelchair access, made us feel more comfortable, instead of standing out like a sore thumb.
As we entered I was taken back to ten years ago when Declan could still walk – boys walking in the exact manner that Declan used to, then there was the tiny manual chairs leading up to electric chairs much bigger and sophisticated than Declan’s. I sat in many talks hoping that I would learn of a treatment applicable to Declan’s mutation of Duchennes that I had somehow not heard about, however this was not to be. 
In 2006 when Declan was diagnosed there was 1600 boys in the UK diagnosed with Duchennes, where are there is now 3000. This is due to more knowledge about the condition and the effects on the cardiac and respiratory systems people are living longer with the support of cardiac medication and respiratory ventilation.
Living proof of this rolled into one of the talks a young man of age twenty six had a discussion on relationships and how he has two children and a wife. At the age of eighteen he was told he wouldn’t live past twenty one and that his dream of becoming a father wouldn’t happen. These words have stayed with Declan and offered him hope.
January 2018 we were told Declan has ‘Heart failure’ which sounds so imminent. Two years prior we were told he has ‘respiratory failure’ – both lead your emotions to the same state of despair.
However, in reality for someone with Duchennes or at least Declan, this isn’t as imminent as it may sound.
Although our heart and lungs are unconsciously keeping us alive every second of every day, for a twenty year old with Duchennes confined to a wheelchair they don’t have to work as hard. Due to Declan not being mobile his heart and lungs appear to be managing to keep his body functioning with the aids of medication and ventilation at night time. I’m aware that this can change at any time, but as he keeps proving doctors wrong I feel sure it will not be as soon as they anticipate. At present there is still no cure for someone with Duchennes and most of the treatments being researched are for a different ‘mutation’ of the condition, so right now, to plateau is the most I can hope for, for Declan and am lucky enough to have it.
Declan continues to live life to the best of his ability, including hitting town to party on his birthday, meeting friends for drinks and even driving himself and his best friend to the ice skating arena in Nottingham for a session on the ice.  
Declan enjoyed driving round and having his best friend beside him, which gave him the ability to forget about the fact he was in a wheelchair and enjoy a day like everyone else around him. After they had come off the ice they went into the cafe, sat and had a chat whilst enjoying a hot chocolate. It’s simple things like this that Declan enjoys the most, just doing ‘normal’ things with his friends.
For the first time in several years we will spend Christmas day with my whole family including my nephew and niece. Both Declan and I are so excited as this will be our Christmas present, being around all those we love and sharing laughs and precious memories.
I wish for all our readers to have a peaceful Christmas full of happiness and love.
Merry Christmas
Love Alex and Declan