Hi, I am also here for a relative, my son. He was last hospitalized for seizures in March, April, and May of this year. The neuro performed a muscle biospy and found out he has Mitochondrial Myopathy. His brain swelled up on March 28th. He was also hospitalized twice in 2008.

I still feel like I am in a state of shock. He has developmental delays and I think I have finally got some help for him at a rehabilitation hospital 65 miles away. I have a pretty low income. We just saw SSI again Friday and I think it is going through. I have no idea how I am going to pay for transportation to get him to this hospital. I am so frustrated trying to get him help. My cell phone bill is so high trying to call when I am on break at work or waiting for a bus after work. I could no longer pay for my landline and my son takes off and can not find proper words to ask questions, so I got two cell phones so I could always call him to find him.

He has been out of the hospital since May 5th of this year.

Nobody should have to go through this. It took me forever to get a neuro-psych test to prove developmental delays, going through medical records and getting them out is a nightmare in itself, then calling and calling to get him some help. Anyone else going through this? He is still seeing specialists, but I have yet to find out what type of Mitochondrial Myopathy he has. He sees three more specialists in October, plus has surgery for another problem that is unrelated.

I have to be off work for each one of these doctor appointments, and my pay is affected by this. We have no insurance and he is 26.