Sunday, September 15, 2013
Mitochondrial Disease Awareness Week!
Today kicks off the start of Mitochondrial Disease Awareness Week 2013. Just the perfect time to make everyone aware of the awful disease that has robbed children and adults of so much. Did you know the every thirty minutes a child is born who will develop mitochondrial disease by age 10? That is 4,000 children each year in the US alone. This makes Mitochondrial Disease just as common as childhood cancer. I could sit here and tell you all these facts about mito but it would mean nothing unless you experience it first hand. You have hardly any energy to even get out of bed every morning. Some kids can't even tell their moms I love you just one time before they are taken away from their mother's arms. No energy to breathe, no energy eat, no energy to walk, no energy to talk, and sometimes there is just no energy to do anything but lie in bed all day but do anything but sleep. It is the harsh reality for several families trying to cope with this awful disease. Tyler's body doesn't have the energy to walk community distances so most of the time he relies on a wheelchair to go from place to place. He gets his nutrition through his AV fistula since his gut shutdown because it could just no longer function anymore. Probably because he just doesn't have the energy to make it work anymore. The fact that 98% of children die before age 20 who are diagnosed with this disease is just horrible. There is no known treatment or even a cure. Every night you just lay in your bed and pray for a miracle. Something that will come along to just fix everything and make it all better again. The body slowly deteriorates and all you can do is watch. There are medications to try and slow the process you take vitamins and supplements. You treat the problems as they arise. That's all you can do. Most kids die because they are even diagnosed just because of lack of awareness. 90% of children diagnosed before age 5 don't make it to age 13. Girls have a better chance of surviving than boys do. What if this was your child? Would you want them to have those odds? We become so close to other families who have children with mitochondrial disease. You fight along side with them you loose some battles and you win some. Mito you suck! you are awful disease and everyone hates you one day you will be gone because we will find a cure. We are supporting the fighters, adoring the survivors, honoring the taken, and never, ever giving up HOPE because sometimes hope is all we have left.