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My Weak Muscles

The journey of a little girl living with Nemaline Myopathy

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Tag: Hospital

A little boy dies

October 22, 2016

If the walls could talk in the parents room of the intensive care unit I’m in no doubt they would share some of the most fascinating, heart-wrenching and inspiring stories … More A little boy dies

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Rosie goes into respiratory arrest

October 20, 2016

Rosie had a temperature, wasn’t sleeping or keeping her feeds down. We’d seen it all before. We knew the drill. ‘Let’s not panic’, my husband Iain and I had said to each other. … More Rosie goes into respiratory arrest

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My Weak Muscles

You’ve found the journey of an inspirational little lady called Rosie who struggles with ordinary everyday activities like sitting, eating, walking and smiling due to a severe muscle weakness disease and mitochondrial disorder. What she lacks in physical strength she sure makes up for in mind and spirit. She is a real warrior facing every day challenges with grace and humour.

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