It has been two years, almost to the day, that I last sat by Declan’s bedside writing for Syston Town News. Unfortunately, I am having to do it again after Declan was admitted into hospital with a chest infection a week after celebrating his nineteenth birthday. 
Currently, it hasn’t developed into pneumonia and we’re praying that it won’t. As Declan is now an adult he is being treated at Glenfield hospital as they specialise in cardiology and respiratory for adults. They have been wonderful, taking time to get to know Declan and allowing me to be with him both day and night to support him physically and emotionally. I had been concerned that as Declan is now classed as an adult that I would be asked to abide by ward visiting hours; thankfully they fully appreciate the twenty-four-hour specialised care that Declan needs and I am allowed to stay with him.  
Moving Declan overnight is a military operation; ensuring his shoulder doesn’t dislocate as you roll him, that you don’t accidentally disconnect his ventilator and most importantly that he is not put into a position that hinders the oxygen flow into his fragile lungs. He can need moving as often as every twenty minutes so the most mundane tasks for me can become challenging, and writing this is no different after having barely slept in four nights. 
Thankfully it is felt that we have caught the infection early and this should be a relatively short hospital stay.
Eleven years ago, just a few months after Declan was diagnosed, I met a wonderful man, only a couple of years younger than myself with a smile that could light up a room and a diagnosis the same as Declan’s. David quickly became our inspiration, showing me that Duchennes doesn’t have to destroy life or a smile. Only living in Anstey, David and his family became good friends of ours, sharing tips and celebrating birthdays. David drove to Declans eighteenth birthday party last year looking very dapper, flashing his hazard lights on the dance floor, still smiling, still enjoying life, still having hope. Unfortunately on Monday 9th October this smile and hope was taken as his heart beat for the final time. Heaven received an unexpected angel leaving a river of tears for David’s family and friends. ‘Heartbroken’ is a phrase used quite flippantly in life and especially on social media. To lose a child whatever the age is real, intense, raw heartbreak. 
I remember losing a good friend at twenty-one. As her coffin disappeared behind the curtain at the crematorium I heard a noise that I will never forget – her mum let out a scream and it still shudders through me. That was the first time I heard the noise that comes from heartbreak, a noise that comes so deep from your heart, that is uncontrollable and so full of pain, fear and despair. I could feel the heartbreak when David’s sister gave me the awful news about her big brother. 
I would like to dedicate this month’s Declans Diary to David Mayes, a friend, an inspiration and all round round top guy who will be truly missed, but never, ever forgotten.
Alex