Declan’s Diary

Since being out of hospital, Declan has been doing remarkably well and has adjusted to using his ventilator in the afternoon, thanks to Netflix.
For Declan’s birthday last year I got him tickets for the gadget show at the NEC, when the day finally came around, Dec was in his element with all the new tech and loved the live show. It was his first day out since coming out of hospital, but he did really well and wasn’t too overwhelmed by all the crowds.
Recently, we visited a muscular dystrophy centre in Chester, after being referred by Great Ormond Street hospital. Declan was assessed by their specialist physiotherapist, who taught me to do stretches on Declan that should help with some of his discomfort. We met some other people with different forms of muscular dystrophy which was really nice and comforting to see how well they are doing. We hope to go back during the summer holidays for Declan to attempt to use their standing frame, something that I was told he’d never manage to use.
As I write this,I feel so proud of Declan who has just finished his first week of GCSE’s, something that at several points over the last year was thought to be an impossibility. He has missed so much school through hospitalisation but has always been determined to live a ‘normal’ teenage life which includes taking his GCSE’s. To me he gets an A star just for taking them with all he has been through and whatever his results I’ll be proud,amazed and inspired.
It’s now twelve years ago since he started school, he’s made many friends who I’ve watched turn into lovely young adults. I want to take this opportunity to wish all of them the very best at college and the future.