Five years on
It’s strange to think that five years ago, Andy and I had never heard the words Duchenne Muscular Dystrophy. Joining Jack and Duchenne UK didn’t exist. They didn’t need to in our world.
We were a ‘normal family’, enjoying life and working hard to pay the bills. I almost can’t remember that life now. I am not going to lie, the years of not knowing that Duchenne is robbing our beautiful, fun-loving son Jack of the use of every single muscle in his body were pure bliss. Please believe me when I say there is nothing more I could wish for than for Duchenne not to exist and there to be no need for Joining Jack or Duchenne UK, and that we were still that ‘normal family’.
As with every anniversary of his diagnosis I reflect on our journey. At first, Duchenne consumed us physically and emotionally, we were completely broken. But we were given a choice after Jack’s diagnosis: to accept the disease and what it was going to do to our son, or to fight it. With strength from our friends and family we founded Joining Jack and began our fight.
As our journey has progressed the size of our mission has grown to being so much more than we initially set out to achieve. As part of our fundraising to pave the way for research which will find a treatment for this disease, we have now began focusing on creating and providing the clinical trial infrastructure to make this happen. Part of our new mission is to ensure that all patients with Duchenne, including children and adults, have access to clinical research opportunities. It is a mammoth mission but it is what transformed the survival rates for childhood leukemia.
Patient advocacy has become a huge part of my life and campaigning to ensure patients get fast access to new treatments is at the core of our mission. What is the point of funding research and clinical trials if we cannot get access to the results and treatments fast enough?
What really drives me forward is the acute awareness that time is running out. I am often left fighting back tears as I watch Jack lose the functions I have so loved watching him gain. It pains me to see him look at the stairs like a mountain looms before him. He looks at me helplessly as he holds up his hands like a baby to be carried up – he hasn’t got the strength left in his little legs to get up alone.
What makes it harder is that his four-year-old brother bounds up effortlessly at the side of him. I hate the nights he cries before he goes to sleep because his legs hurt or because he’s frightened of what his future holds. I look for words of comfort and struggle to find them. I fight back tears as I don’t want him to see my fears.
I know the treatments are coming, we are making them happen, they are starting to dangle before us like the proverbial carrot, almost in our grasp but will they come in time?
With time very definitely not on our side, we must campaign to remove the bureaucracy of drug development, approvals and reimbursements that stand before us. The politics, insensitivities and roadblocks we face often consume me and the way forward isn’t always clear but that’s where I am lucky to have people who steer me back on track and focused on our mission.
A mission which this year, has brought about a partnership with Duchenne UK. The collaboration of Joining Jack and the Duchenne Children’s Trust (DCT) came as little surprise to many who know me and DCT founder and fellow Duchenne mum, Emily Crossley. We have become a formidable pairing. Together we are driven, dedicated and devoted to our mission.
Duchenne UK is focused on helping us to deliver our mission. Our impact statement is testament to what we have achieved and how we are already working on our groundbreaking next projects.
Our Impact shows that we have: