It’s like being kicked in the stomach or stabbed in the heart when you hear the words at your son’s 6 monthly review of ‘no improvement’ or ‘decline’.
I hadn’t thought we would hear such things for years, as on the surface William looks like he is doing so well. He is growing, developing, having no side effects to steroids, heart protection medication, stomach protection medication and you think ‘ok, things are going alright’.
Boys with duchenne are ‘scored’ under the North Star Assessment. Lots of physical tests to see what they can, or more likely cannot do. William has never been able to walk up or down stairs unaided, we’ve known this all along. This means he scores quite low in this test. The problem is he had not gained and has now dropped a point in the last 18months – therefore are the steroids working? Are they doing as much as they should? Or, should we review them and up the dose/change the dose.
This is something as parents we now have to decide. The heartbreak of watching your son ‘fail’ in some of the tests and knowing really that there is nothing you can do for him. You’re trying, you’re hoping for a cure, for something that will stop his muscles wasting away. But 3 years in and nothing has come along and now we’re seeing negatives of this shitty, crappy disease.
What to do? What to feel? At the moment I feel lost, helpless and very low. I feel on the edge.
Me and hubby will make the decision and we’ll stand by whatever we decide, but I just want to go back to when he was 2 years 11 months old and had no idea what duchenne was and stay there forever.
Today is a day which I want to forget.
Today is a day when I would happily say ‘fuck you duchenne’.
Do you know what though? Our gorgeous boy smiled all day at hospital, he got on with it and he is just so bloody amazing I cannot be prouder.
My heart breaks for him but is also so full because of him.
Please help us find a cure. Give him an amazing life and keep that gorgeous smile on his face for a long time.