Jack was given pioneering drink to beat muscle wasting disease and can still stand. His best friend...

But looking at them both together today is bittersweet for Eli's mother Emily Reuben.

And no one knows this better than Emily, a former journalist with CNN and Channel 4 News, who is co-founder of the charity Duchenne UK. It may also extend their lives. The longer they remain able to walk, the healthier they will be overall, experts say. 'He is remarkably resilient,' Emily says. 'He's incredibly funny and a kind, caring brother. And he and Jack get on so well, despite everything.'

Last week, another new treatment for DMD, vamorolone, was rejected by Nice because it was considered too expensive.

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