My Weak Muscles

The journey of a little girl living with Nemaline Myopathy

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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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This little lady never ceases to amaze me 😃

It's a thumbs up from Rosie!

Wasn't quite the outcome we were hoping for but I know it was the right decision to intubate Rosie yesterday. 1 step forward, 3 steps back. It's been a long time since we were last on this emotional rollercoaster :(

Rosie was moved to the intensive care unit a couple of days ago. Shes got a common cold but - that along with aspirating on her vomit - has made her lower left lung collapse.

We've definitely had better weeks!

ahhh... the joy of a little freedom, fresh air and spending quality time with these two at nanna and grandads for the first time in months 😍

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