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My Weak Muscles

The journey of a little girl living with Nemaline Myopathy

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Category: Complex 1 Deficiency

nemaline myopathy and complex 1 medical journal

Rosie in the medical history books

May 10, 2020

A few years ago I wrote a couple of blog posts about Rosie being diagnosed with Mitochondrial Complex 1 deficiency. It was a bitter blow followed by a total miracle.

Over the last few years there have been big questions about how … More Rosie in the medical history books

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“Enough”

January 6, 2018

It’s been a while!

To be honest, I haven’t felt like writing much – nor have I had the time or energy.

Life found my weak points and relentlessly … More “Enough”

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A year living with Complex 1 Deficiency (part 2)

November 25, 2016

So here we were. Rosie was in hospital recovering from another nasty cold. Her lungs were collapsing left, right and centre – literally – and Iain and I were dealing with the news that Rosie was going die … More A year living with Complex 1 Deficiency (part 2)

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A year living with Complex 1 Deficiency (part 1)

October 31, 2016

Before September 2015 (and after that terrifying night where she died outside the doors of A&E) we lived in hope that life with Rosie would be manageable. We lived in hope … More A year living with Complex 1 Deficiency (part 1)

3 Comments A year living with Complex 1 Deficiency (part 1)

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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.

Instagram

Huge thank you to the mystery sender of this delightful package! What a fabulous surprise :)
Much needed R&R this weekend!
Happy 1st birthday my little gorgeous man 💙 you certainly bring the entertainment (and a lot more noise and mess) and we wouldn't want it any other way!
CAN YOU HELP MY ROSIE CLIMB A MOUNTAIN?
Totally fallen in love with this gorgeous ball of fluff! Welcome to the family Whiskey Bob! 💙
A rare Saturday morning sleepy cuddle with his big sister ❤
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