Help people with weak muscles get the treatments they need

Help people with weak muscles get the treatments they need

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My 8-year-old son, Charlie, has muscular dystrophy. It means that his muscles will get weaker and weaker as he gets older.

We know that there are new drugs on the horizon that could be life-changing for Charlie. These drugs could postpone some of the devastating effects of muscular dystrophy and enable Charlie to keeping running and playing, just like other children his age. 

Delaying access to these treatments – or even ones that could buy more time – hurts boys like Charlie. The uncertainties around how the NHS will provide new expensive drugs for genetic conditions leave me terrified for his future. That is why we are calling on the Prime Minister to help remove barriers to people with muscle-wasting conditions accessing treatments.

Charlie understands that doctors are developing new medicines to help him and others with weak muscles. What he doesn’t understand is why he can’t have them. 

Charlie’s message to the Prime Minister is simple: “Please will you help me and other people with poorly muscles to get our medicines more quickly?” 

 Thank you

 Charlie and his Mum