Mom Fights to Change Law for Son with Duchenne Muscular Dystrophy

A MUM from Hythe is lobbying the Government to push through a bill which will allow her terminally ill son to access promising medicine that could prolong his life.

Claire-Rose Young is calling for more to be done to help her seven-year-old son Charlie who was born with Duchenne Muscular Dystrophy – a fatal genetic disorder that affects one in every 3,500 males.

His condition means Charlie probably won’t live past 20.

It also means simple tasks such as eating and walking independently are something he will not be able to do in the future. He has no dystrophin in his body, meaning muscle cells are easily damaged, which can lead to serious medical problems particularly with his heart and lung.

Read more of the story at the source.

Filed Under: Insights, Patient Stories


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