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My Weak Muscles

The journey of a little girl living with Nemaline Myopathy

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Tag: Charity

Mt. Kilimanjaro Part 6: The final part of the journey

July 28, 2018

The best way to descend from the roof of Africa is to sand surf. The slopes are steep and sandy and the guides want to get you down as quickly as possible to avoid the unfiltered rays of the sun – which are growing stronger by the minute … More Mt. Kilimanjaro Part 6: The final part of the journey

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Weekend break at Charlton Farm Children’s Hospice

April 22, 2018

We were first introduced to Children’s Hospice South West (CHSW) in 2015 when Rosie was diagnosed with Nemaline Myopathy.

CHSW is a charity providing respite and hospice care … More Weekend break at Charlton Farm Children’s Hospice

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Mt. Kilimanjaro Part 2 : Machame Gate to Shira Cave Camp

October 10, 2017

I made a quick call to Iain and Rosie in the morning to say my last goodbye for a while as I didn’t know when I would be able to get signal again. 27 slightly anxious people, most of us strangers, all gathered in the reception … More Mt. Kilimanjaro Part 2 : Machame Gate to Shira Cave Camp

5 Comments Mt. Kilimanjaro Part 2 : Machame Gate to Shira Cave Camp

Mount Kilimanjaro calls (Part 2)

January 10, 2017

So, there I was feeling alive, brave, inspired, strong and capable. Then my Mt. Kilimanjaro welcome pack arrived and I crumpled.

I’ve always been the type of person (usually needing a bit of persuasion or a glass of wine!) to spontaneously agree or sign … More Mount Kilimanjaro calls (Part 2)

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Mount Kilimanjaro calls (Part 1)

December 20, 2016

In 2009, I watched nine celebrities reach the top of Mount Kilimanjaro – the highest freestanding mountain in the world – on television in aid of Comic Relief.

Describing the climb as ‘horrific’, ‘agony’ and ‘hell on earth’, I watched … More Mount Kilimanjaro calls (Part 1)

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No more midday nap = way more fun!

November 28, 2016

We’ve just had a Rosie regime shift and it’s turned out to the best thing we’ve done for a long time!

Rosie’s sleeping habits have been far from ideal. Unable to roll over or move herself … More No more midday nap = way more fun!

2 Comments No more midday nap = way more fun!

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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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