Being the parent of a child on a Clinical Trial

Put at its most blunt, Duchenne is a terminal, progressive muscle-wasting condition. Every person living with it follows the same journey — some follow it faster or slower than others, but it always ends in the same place.

On the surface of it, clinical trials for Duchenne seem like hope, a lifeline. Given the seriousness of the condition it feels like you have no choice but to take part.

When we enrolled Jack on the clinical trial, we hoped that it would give him access to a medicine that might slow the relentless progression of Duchenne. While we had hope, we also had very real fears about him trying an untested medicine.

Clinical trial drugs can and do have side effects. What if he was to suffer from side effects or the drug made his condition worse? In the past few years, we have seen two brave Duchenne boys lose their lives while on trials. These have been heart-breaking losses for our community.

That's why the past 18 months have been tough at times. We watch Jack take a medicine everyday and wonder what it's doing to him on the inside. Our lives are filled with hope but also questions and uncertainty.

Jack has been incredible while on the trial. He takes it all in his stride with a big smile on his face and willingly complies with every test — there have literally been hundreds. His dad can't even get into an MRI scanner, but I have lost count of how many times Jack has been in one and has never complained once.

We are lucky to have a great clinical trial team caring for Jack at Alder Hey. They really do go above and beyond to make sure he's happy, well cared for and monitored continuously. Jack considers them to be his best mates.

We are grateful to everyone who has helped us to fund the DMD Hub. It has given hundreds of children like Jack the chance to take part in clinical trials across the UK.

Joining Jack has contributed £378,054.46 towards the £3 million Duchenne UK has committed to the DMD Hub to date. This has created 34 Duchenne dedicated posts of doctors, nurses, physiotherapists and clinical trial co-ordinators across the UK. There have been 437 more boys on clinical trials since its launch in 2015.