A very difficult story for two families with close bond

In the weekend's Daily Mail, Emily has told a very difficult story for both of us. We are very lucky that Jack is on Givinostat but it preys heavily on our minds that so many are not who could benefit.

Jack was given pioneering drink to beat muscle wasting disease and can still stand. His best friend Eli didn't get the drug and now he is permanently in a wheelchair. Their contrasting stories prove new treatment works — so why is NHS rollout at risk?

The article discusses how two families — one child receiving Givinostat treatment and able to stand, while his best friend without the drug is wheelchair-dependent — show the urgent need for access to treatment for all Duchenne patients.