re: Looks like Justina Pelletier likely to go home

My son has mitochondrial disease. This case scares the hell out of me. The hallmark of mi to is waxing and waning. It's a disease on a cellular level. So, while a child may appear outwardly healthy, they can be in very bad shape internally. So many doctors have never even heard of it. I took my son to the ER once following a fainting spell and presented our emergency protocol from our geneticist (blood work and treatment plan). They took us back immediately, ostensibly to prevent exposure of any kind (making me think they understood). We sat in a room for 4 hours without the first person coming in. And the ER was empty minus one other patient. I finally went on a search for someone and found them all at the nurse's station behind a computer screen with a Google page of mito links up. They had absolutely not the slightest clue what his condition was or what to do, which is the reason for the emergency protocol. We left, and I learned a lesson. The only doctor I trust implicitly to make decisions for his care is the one who diagnosed and has been treating him for 2 years. But, when this story cane out, I remembered our ER trip. What if they decided I wasn't making the best choice for my son? Parental rights are being eroded seriously in our country. I hope someone (multiple someones, most especially the judge) is held accountable for this fiasco.