Life at the moment
Feb 4, 2016
By: Ginny Butcher
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Hi
So... I have lived with Nemaline Myopathy for 17 years. I have a tracheostomy, full time ventilation, spinal rods to correct a scoliosis and 24 hour care. I previously had a gastrostomy but I have since had it removed.
I lead a normal, reasonably healthy life and I hope to go to university this year.
Please feel free to contact me.
Ginny B
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