Clarification

Someone left a comment on here about something they misread into our posts about Mitochondrial Disease. I feel the need to clear this up since the assumption was completely wrong. NEVER did I say all people with Mito have tracheas. I know for a fact that is NOT the norm. NEVER have I even said that it is due to the Mito itself. My reference to this was rather that this is what docs and people who think of the disease when they hear it. THey automatically think worst case scenario and that is actually NOT the truth. It was just a way to give a more severe look on what the general misinterpretations of this disease are. There is no particular way to look at a person and know they have the disease and that is so important to know.

Never did I say that people with these assisted breathing devices or any other type of assisted device ever suffer because of the devices themselves. I know for a fact that they are a blessing to those who need them. It is rather the fact that people with this disease generally suffer until they get the proper care and assistance they need. There can also be things that come with these devices such as infections and other things like tissue build up that cause pain and trouble for them. This has nothing to do with the partents or the disease directly. Even my children have "suffered" from side effects or complications associated with the dysfunction of whatever system that is being affected.

George suffered with reflux. Yes reflux is not an issue with Mito itself but rather a side effect of the low tone in his tummy that was caused by the issue with Mito. Michael had the same troubles and still has many tummy troubles that plague him. The actual definition of suffer is to feel pain or distress and yes these patients feel these things until they are under control. It is the gross misinterpretation of the word and its use and how it has been used across the years that tends to be an issues. Yes, my children suffer with medical issues that were or were not related to Mito. Everyone "suffers" at some point in their lives!

George did not have an official diagnosis but his older brothers did and he was in worse medical shape then his brothers ever were. I was told by physicians compitent in the field they felt that he had this too. If you know anything about the disease then you know you may have to rely on just a clinical diagnosis rather then hard proof. I am so sick of being told by some people that I don't have a "right" to say he had this because I didn't officially know. That is quite honestly a bunch of crap! I know many people saying they have Mito who have clinical diagnosis yet have not gotten flack like I have. I am not obsessed with the diseas nor do I think that everyone has it. It is part of our lives so yes, i am going to talk about it or reference it when any issue comes up with their health or general well being. It is part of who they are yet it does not define them.

In the end I know my children and George had this disese dispite what anyone says about it. He may have died from an unrelated cause but his life was truly complicated by it and his death very well could have also been complicated by it. We will never know the true cause of his death because by looking at him you could not tell what was wrong even on an autopsy. His death will be labled as SIDS because they don't have any answers and that was exactly what came from the Medical Examiner's own mouth. It does not demean anyone elses fight with this battle for me to say he had this. It stinks for anyone who has it no matter how severe or how unsevere it truly is. Anyone can die at anytime from this disease or complications of it. This sort of attitue is what makes it difficult for those who have it to associate with one another and eventually feel as if they are alienated by those who they feel should or would be the comrads in this fight. No one who has this has it any better then anyone else. There are people fighting severe cases and others fighting less ones and both have the same chance at dying or having complications, we all do.

We are truly blessed to have children who are less affected by the havoc that this disease can cause to a person's body and life. I thank God for that very fact every day but that does not mean I am about to let my guard down and not fight for the things and care they deserve. One simple cold could send them spiraling into something that will threaten their lives and I am not about to sit by and allow that to happen. Yes it could be a "simple cold" but it needs to be watched more carfully. I have been told this by every Mito specialist we have gone to. They are not "Normal" and I cannot ignore that fact because I would just be doing them a gross disservice.

We have gone both ways, lots of docs with lots of input, and hardly any docs with very little input. In the grand scheme of it neither one is any better and both scenarios stink. Whatever happens will happen and I know that but there is a fine line that must be walked when diagnosed with this disease. My kids get the very best care available to them and they deserve that. I have never taken their care into my own hands because I just don't feel comfortable doing that. They may have a slew of docs but that is because they specialize in medicine and their field, I specialize in being a mom. We trust their oppinions unless my instinct tells me something different or they tell me they cannot handle the situation. All, of which, are ok because no one is perfect and we need to put our personal feelings aside for the greater good of those being treated.

I feel for those who have to allow docs to have more input in their lives then they truly want or need but there is a flip side to that coin. It is just as terrible to know there is something wrong and to be ignored or just not be able to pinpoint it dispite your greatest efforts. Both situations are horrible an leave you feeling helpless but also come with the territory. In the end we all do what we feel is right at that very moment. It may not have been the best choice looking back but at the very moment the choice was made it was the right one.