About Mito
All of our cells contain nifty little units called mitochondria. Our mitochondria are responsible for making the energy needed for our cells to work. Noah's mitochondria don't work correctly. This means his cells don't function correctly, and this in turn means that various body systems stop working correctly.
Noah's body is always running at an energy deficit - there is never enough to go around. As a result, energy is diverted from some body systems in order to power other ones. Our guts and our neurological systems are power hogs, and Noah's gut has been severely affected by mito. He is also showing the effects of his disease in many other body systems. When Noah needs more energy because he gets tired or hot or cold or sick, or if any other thing happens to use extra energy, his body has to compensate by pulling the energy from somewhere. It's like a city having brownouts or even blackouts in the hottest part of summer. When this happens, the consequences can be grave - he's experienced the complete shutdown of his gut on multiple occasions, has gone into DIC, has had neurological problems, and more.
There is no cure for mito. There is no treatment for mito. It is a serious, progressive disease and all we can do is try to put out fires and support body systems that are affected. No body system is safe from mito and as Noah's disease has progressed we have seen more systems get involved.
We have to be careful to support Noah and help him conserve energy. When he gets sick, he gets very, very sick very, very fast so we always have to be ready to go to the hospital on short notice. Things like a cough or a virus that would not be a big deal for other children can be deadly for Noah, so we are careful to limit his exposure to germs. He cannot handle even small fluctuations in temperature because he can't cool or heat his body appropriately. If he goes outside in warm weather he usually wears a specially designed cooling vest. Even though Noah is capable of walking, if he walks much he gets very tired and often experiences additional gut problems, so we have to limit his activities outside the home.
You can read more about mito at Mito Action or at the United Mitochondrial Disease Foundation. Several of the children listed in the sidebar of this blog are also suffering the devastating effects of this disease and need your prayers.
Posts
