Declan’s Diary

Four driving lessons in and Declan is already driving his large Mercedes sprinter with almost as much confidence as he drives his wheelchair.
Learning to drive is both exciting and nerve wracking for the best of us, but to be learning in a very large van and trying to zigzag your way round parked cars on ‘The Avenues’ is a whole other ball game that Declan makes look easy. 
His efforts to lead a ‘normal’ independent life never cease to amaze me.
Every aspect of Declan’s day has its own challenges but with Declan’s patience and wit, we manage to make it work and it’s become our ‘norm’.
2016 was a fantastic year for us as Declan didn’t have any hospital admissions which is incredible considering over the previous three years he had spent at least six months in hospital per year. It appears that using a ventilator overnight and daily chest physiotherapy is really keeping his chest clear from any infections settling.
I remember the first time he wore the ventilator, this mask covering his nose and mouth with straps going round his head attached to a machine, that would basically breath for him over night. I was scared to go to sleep as this noisy machine blew air into Declan’s lungs and then sucked air out, I was worried that I wouldn’t hear him if he needed me or how scared he would be waking up with this strange thing on his face. Due to Declan’s condition he can’t even move his head in bed let alone take of a mask if there is a problem. Two years down the line it is literally a life saving with its constant whooshing noise becoming a bit of a comfort to Declan.
We are very blessed to live in a country that provides such respiratory  support, giving young men with Duchenne’s a better quality of life.
Now that Declan is eighteen we are trying to give him more independence, obviously this is limited as he always needs someone with him.
We are now in the position to offer someone with a great sense of humour, caring and a zest for life the opportunity to be a personal assistant for Declan.
To apply please send your CV either by email to: [email protected] with PA for Declan in the subject line or in writing to PA for Declan C/O Syston Town News, 55 Goodes Lane, Syston LE7 2JL
The Syston Town News is acting as agent for Alex and Declan.
All mail will be passed onto them for consideration.