"Life is not measured by the number of breaths we

take, but by the moments that take our breath

away.” Author Unknown


Thursday, August 28, 2008

Mito Disease Awareness Week...

What is Mito, anyway?

Mitochondrial Disease Awareness Week is September 21st- 27th! Mitochondrial Disease... Most people hear the word "Mitochondrial" and kind of scrunch up their face... "Don't know how to say it, don't know what it means, and gosh, hope I never need to know."

"Every thirty minutes a child is born who will develop a mitochondrial disease by age 10."

It sounds like maybe this is something you might want to know something about. What do you think? Here is what the UMDF (United Mitochondrial Disease Foundation) gives as its basic definition of Mitochondrial Disease: (try to sift through the medical jargon, you can do it!)

"Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection."

In Connor's case, most of his Doctors felt that he had an underlying genetic, metabolic disease from birth that kind of "triggered" his mitochondria to fail. Thus, "mitochondrial disease". When it all comes down to it, regardless of the trigger, mitochondrial disease happened to be one of too many very challenging medical conditions Connor dealt with. Many of the other children we know and care about have also suffered from, or already passed away, due to this horrendous disease. We pray for a cure. ASAP!

Please take the time to become familiar with the basics of Mitochondrial Disease. The name is long and maybe it seems awkward (you could always just refer to it as "mito" if that makes it easier), but it is so worth taking the time to know what it is, and how it affects so many children and adults. After all, if you check on this site, you already know of at least one child and family it has deeply affected.

Below are listed those we love & care for who have also been affected by this disease. Little Mito Fighters: Alex, Lauren, Sheldon, Gavin, Brody, Teddy, Landon, Maya, Colyn, Matthew C., & Joshua. Those who beat Mito, and are in heaven with Connor today: Zach, Sam, Kyle, Mattie & Ryan.

Become aware today at...http://www.umdf.org/ & http://www.mitoaction.org/

Watch a video about Mitochondrial Disease below:

http://www.youtube.com/watch?v=UjIBu0tiXk0