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My Weak Muscles

The journey of a little girl living with Nemaline Myopathy

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Category: Communication

Mouth matters and a blue badge of blessings

February 22, 2017

It’s fair to say that we’ve always had concerns about Rosie’s mouth and general oral functions. You may have seen that her mouth is always open – it’s not that obvious, you’ve probably not noticed! … More Mouth matters and a blue badge of blessings

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What are our names?!

November 19, 2016

We’ve been spending a lot of time recently on Rosie’s communication and she’s now a real chatterbox – there’s no stopping her!

She listens so intently, watching our mouths move and … More What are our names?!

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Mastering the letter ‘D’ on video!

November 13, 2016

Rosie’s communication is really starting to come on. Over the last couple of years she’s been trying really hard to master certain letters and words. Her speech is very vowel focused and she loves the letter ‘N’ … More Mastering the letter ‘D’ on video!

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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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