Mitochondrial Disease Awareness Week

Of course I stole this information from a Mito mom friend, who stole it from a Mito mom friend and so and so on.  It's  a pretty simple list of some of the ways Mitochondrial Disease affects people.  My children to be more specific.   

"This week is Mitochondrial Disease Awareness Week.  Mitochondrial disease is often referred to as an energy crisis in cells, it may be a misunderstanding that this disease is all about lack of energy or fatigue. Don't get me wrong, overwhelming fatigue is a daily occurrence for many but there is so much more to this disease than lack of energy or being tired. It i

s also about:

- the stomach that will not empty or is unable to digest food or the bowel that becomes
unable to move
- the tremors, abnormal movements, seizures, cognitive deficits, dementia, migraines,
strokes, and development delays
- muscles that are in almost constant pain (imagine having the flu every day of your life)
- kidneys that do not function to remove waste from the blood
- the loss of hearing and/or sight
-liver disease
- the autonomic nervous system that malfunctions so heart rate, perspiration, digestion, respiratory rate, and pupil dilation are compromised
- heart defects such as cardiomyopathy and heart blocks
- diabetes and endocrine system deficits
- weakness of the respiratory and skeletal muscles
- weakened immune systems that can turn even a mild illness into a life threatening emergency"

The list goes on but this is a pretty good start.  My kids have the majority of problems on this list with exception of liver disease, heart defects and hearing or sight loss.  I am so thankful that those parts of them are still functioning normally.  

We've been trained to believe that if something ails us, we can simply take a pill to feel better.  Nothing cures Mitochondrial Disease.  Nothing.  The mitochondria are like scaffolding.  They keep the cells up and functioning.  When they become diseased, the scaffolding begins to crumble and we begin to see disease that can not be cured and the damage is irreversible.  It's a sad thing.  The hardest part of the disease for me as a mom, is to hear and see my kids struggle everyday and not be able to do anything to help them.  No matter how much they beg for relief, I can only offer a hug.  Hugs and kisses work fine on boo boos but not on mito disease.