His primary school years have been good, it makes such a difference to have an understanding school and good friends to help support you. Sports days have always been bitter sweet, we see Alex giving it every thing he has and everyone cheers him on, but deep down its so hard seeing him struggle to keep up with his friends.
He still enjoys a kick around it the garden, but walking long distances is a struggle as is walking up and down stairs. We’ve renovated our home and got his a new powered trike to assist him getting around. We want to keep Alex mobile, keep him strong. But without new treatments we know we can’t.
Alex is on steriods – the only treatment available to him to keep him mobile for a few extra years – but this is putting strain on him. He’s already broke his hip a few years ago because steriods make your bones weaker. He’s always struggling with his weight as steriods make it hard to stay slim. He’s definitely shorter than most of his friends as steriods stop you growing as a normal rate.
Alex is currently taking part in a clinical trial up in Newcastle – he was the first boy in the UK on the new drug. He’s been on it for 2.5 years now and we are waiting news to see if it’s helping build muscle. You can read all about it here.
For now, life is good. We treasure our moments of happiness, but behind closed doors and behind the big smile we put on our faces, we know Duchenne is there lurking in the background. That’s why we all love Alex’s Wish and the support we receive from our fabulous Wish Warriors and Business Supporters – they make things easier. Knowing they are working hard to help us as a family. We truly believe that new treatments will come soon. There is reason now to be optimistic, there is definitely lots more happening now than there was ever been – we feel very hopeful for the future.