Every morning, I watch my son, Ben, pull himself up to stand. At 11 years old, we are lucky he still manages, but I see the effort it takes. I see the strain in his legs and body, the quiet determination in his face. I see what Duchenne is stealing from him, bit by bit.
Ben was diagnosed with Duchenne muscular dystrophy at just four years old. From that moment, our lives became a race against time. We’ve thrown everything at it physio, steroids, clinical trials - anything to slow this relentless disease. But now, when there is finally a treatment available, we find ourselves battling something even more insidious: bureaucracy.
Givinostat, a drug that would help preserve Ben’s mobility, is being offered for free through the NHS Expanded Access Programme (EAP). Yet despite this, the Oxford University Hospital NHS Trust is dragging its feet. Emails go into a holding pattern. Promises of “looking into it” and “providing timelines” lead nowhere. Every call, every meeting, every thread of hope stretches into weeks of waiting. And in Duchenne, weeks matter.
What’s even more infuriating is that we have the backing of MPs, people who have invested time, influence, and effort to help push this forward. We sat with Wes Streeting, the Secretary of State for Health and Social Care, who promised to help find solutions.
We secured support from 25 MPs at the Time is Muscle campaign event. And still, the wheels of bureaucracy grind at a snail’s pace. If even political pressure can’t cut through the red tape, what hope do families like mine have?
And I have to ask, how do the doctors now sitting in NHS management, the ones making these decisions, reconcile this with the oath they took when they entered medicine? The Hippocratic Oath, the very foundation of their profession, is built on do no harm. But delaying access to a drug that could change a child’s future is harm. Stalling until NICE approval, knowing full well that children like Ben might no longer be eligible by then, is harm. Allowing Duchenne to steal more from these boys while they argue over paperwork is harm.
This isn’t just about policy or cost. This is about real children, like Ben losing their ability to walk while Trust management dithers. And if we have to wait for NICE approval? There’s no guarantee he will still be walking by then.
This is cruel. It is unfair. And it is unnecessary.
Ben is the brightest light in any room. His laughter is infectious, his kindness endless. He deserves a chance at every good day we can give him. Yet, the system designed to protect and care for children like him is letting him down.
I will not stop fighting. I will not stop pushing. Because every day wasted in bureaucracy is another day Duchenne wins.
And I refuse to let that happen.
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