THE GENES DON'T FIT WRITE!!

Welcome to my blog, THE GENES DON'T FIT WRITE !! A personal recount of the trials and tribulations my family and I have lived through as I fought for mine and my children's symptoms to be acknowledged by medical professionals; the harrowing, acute and often mysterious medical emergencies and hospitalizations we've all encountered, and the events leading up to finally earning the proper attention we needed in order to medically investigate; what would result in a diagnosis called Centronuclear Myopathy Type 4 - a Rare and New Muscular Anomaly that few doctors, including our Specialists, have ever even heard about!