Family Stories
In this section, you can meet some of the children and adults who have been affected by myotubular myopathy. The statistics for myotubular myopathy may be grim; but there are tales of courage, determination and a zest for a full and happy life, which are truly inspirational. Through photos, experiences, thoughts or even a poem, here you will get to know the life of someone who is deeply loved, and sometimes lost.
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Have you been affected by myotubular myopathy? Do you have a story
which you would like us to include here?
Please email melaniespring@myotubulartrust.org
if you would like to share your story.