Bonnie Breslin-Contreras
Hi, My nephew (brother's son) has just been diagnosed with Myofibrillar Myopathy (desmin storage myopathy). He is now 3 months old & has been hospitalized since birth. He just had to have a tracheotomy last Friday. He is unable to swallow or breathe on his own. I have not been too successful in finding a whole lot of literature/information on this disease. Have you (or anyone else) been able to find information/literature? If so, can you please direct me as to where I could do the same. ~Message posted in 2001: How is your grandaughter? What are some of her symptoms?