Story about Nemaline Myopathy , Nemaline Myopathy.

nemaline myopathy

Aug 29, 2017

By: Laura

Year Condition Began: 2004


ACTA1 ;mild to severe side; NIV/night, Gtube, spinal curvature >70, surgery never done/considered too risky by local surgs

Complicated labor-ischemic hypoxia
autistic, failure to thrive
used to walk 2 to 5 years

declining :(

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