17/09/2024
Today is World Duchenne Awareness Day 2024, the day we ask you to fly those red balloons 🎈 to you it’s just a day but for us raising awareness and living with Duchenne is our life!
I fly my balloon for my beautiful boy Joel, lots of people will never see the real Joel he doesn’t let many people in but for those he does you’ll find a grumpy, Marvel obsessed, quick witted funny little boy, who has no idea just how amazing and brave he is! He’s my very own hero! Everyday he gets up to battle what Duchenne throws at him, it’s so tough on him, it affects every aspect of his life, he’s losing abilities physically very quickly now last year getting off the floor had stopped but now he can’t even stand from the majority of chairs! Duchenne has really changed the way he looks now too and as a teenager this is a massive issue for him. As the reality of Duchenne dawns on him he’s still struggling mentally too. We always try to fulfil his dreams, give him plans to look forward to and keep him smiling but man is it tough and our full family feels the pressure. We no longer have those weekly appointments to Leeds for infusions but we still have those weekly appointments just at home. Each week he has an infusion, we take him to Camhs for therapy and hydrotherapy. We still have appointments flying at us left right and centre with the busiest probably connected to the huge amount of equipment now scattered though our home!
I think the only thing tougher than him going through a life with Duchenne is having to watch him, it’s cruel, devastating and soul destroying and we are absolutely powerless to change his fate. I can’t even tell him to hang in there it will get better because it won’t. I would trade places with him in a heart beat, but I can’t so I cry my tears when he’s not watching and pick myself up each day, hide my broken heart, crack on and make the most of every precious moment even those where he pushes me to the limit! You push away all you like Joel nothing will stop me being there every step of the way to hold your hand……. Or walk slightly behind you and pretend I don’t know you which is your current preference 😂😘
Love you to infinity and beyond Joel x
