So I find myself back on a train to London.. Representing Duchenne fighting for my son, fighting for this generation of kids with Duchenne, Fighting for a chance.
The landscape has changed since the last time I did this journey, it’s changed in a variety of ways.
1. There is a number of reputable, effective Duchenne specific charities/patient organisations of which Duchenne Now is one.
2. Duchenne research is accelerating it is no longer just a strapline, there really is tangible hope. The sort of hope you can get a grasp of. Ok so if your kid is over 12 it’s maybe a finger tip touch but for those with young boys with Duchenne you should really be able to take a good grasp on hope. Not a cure, but realistic therapies are on the horizon! Alternatives to the harsh steroid regime that yes keeps our kids mobile for longer but stunts their growth, makes them bad tempered and thins their bones.
3. Collectively our voices are being heard and we are being taken seriously (I think) we, parent organisations, have been invited to a meeting with NIHR and clinicians and in fact our patient organisations will actually out number representatives from health.
Two things however haven’t changed and that’s
1. We still don’t have ‘it’ yet
2. My fear!! My fear that it could all be too late for my son and for those I have shared my 11 year Duchenne journey with.
I’m sitting on a train having got up at 5am on my ‘day off’ for what? To change Zak’s future or ensure that the next generation of kids with Duchenne have a future? Jury’s still out on that one.
My biggest frustration as I sit here reading through the info is that 8 years ago there was a campaign led by the charity I was then working for (AD) to increase the current centres of excellence in the UK from two to five. We wanted a centre of excellence within 50 mile radius of every Duchenne patient. We knew the UK couldn’t cope with clinical trials as it was and we knew all of the great advances in research would be worthless if we couldn’t get them past the finish line. I’m also I have to admit angry and resentful. The opportunity was there to do the groundwork to put structures in place but the opportunity was lost. The words we spoke dismissed by others. We couldn’t do it on our own we needed the established MD charity to support it and we needed the support of respected clinicians. I’m sure behind closed doors the words were uttered ‘what do they know’
In my eyes and yes I’m ‘just a parent’ but in failing to commit back then to a strategy this generation of kids with Duchenne were failed.
My plea now is that the same mistakes aren’t repeated. For some it’s too late and that truly breaks my heart. For others the future can be changed.
In my little fairy tale world there would be a holding to account of those who thought they knew better. But in reality that won’t happen. But I live in a horrible sense of de ja vu. I find myself wanting to scream at those who I think failed my son. But what good what that do? Life is literally to short.
My hope is that we as a community now seize this opportunity with both hands that we make the right decisions and Duchenne clinical trials thrive within the UK. I hope that effective collaboration takes place that over rides the past, individual charities agendas, reputations, I hope that the ‘turf war’ ends and we can make up for lost time! Stronger together? I sincerely hope so!