Tuesday, September 20, 2011

Mitochondrial disease is a killer

Light a Light for Mito 
On Wednesday September 21st, 2011, as we celebrate and join together to raise awareness for mitochondrial disease across the globe, we remember those who have lost the battle with mitochondrial disease and ask that friends and family "Light a Light" in their memory.

This idea is from MitoAction and I thank them for that. Everyday some parent, or adult is told you have mitochondrial disease. Everyday a parent or adult is told we have done everything we can, there is nothing left to help you. Everyday someone passes away due to mitochondrial disease or it's complications. 

Some families don't even know that mito was the culprit until testing comes back weeks later. Other families barely had time to register what mitochondrial disease was before it was over. Most of us with mitochondrial disease live with it for years. We see the disease progression. We know the end. 

Like a patient with incurable cancer we know the disease is attacking our digestive systems, heart, liver, or muscles. Leaving our lives in shreds and we have no way to stop it. 

Mitochondrial disease can be a steady progression downward. Mito can be a surge downward when an infection attacks the body. There are mito patients that spend more time in the hospital in a year than out. While in the hospital, with our weakened immune system, we pick up viruses that lay dormant waiting for the body to become weaker and then pounce just as deadly as mito itself. 

One of my lovely children has at least one of those viruses waiting in her lungs. As a parent can you imagine my fear when she starts to cough? 

Please join us today in making the picture from above your pic on FB or Twitter in honor of those that have passed away, and a silent hug to the families left behind. Thank you.


  1. I do this in memory of my son Connor 6/14/04-10/6/04 he died due to complications from COXIV. He is my prince, my mito angel, and started my fight for a cure - me and my four other children have been dx'd with mito as well.

  2. My heart goes out to you. ((hugs)) my friend