Wednesday, July 25, 2012

Mitochondrial Disease #hopeforkendall

This is our niece, Kendall, who suffers from Mitochondrial Disease.  Kendall's story is long and crazy.  We refer to her mother, Dan's older sister, as Dr. Terra after all the research she's done on Mitochondrial because she's smarter than most doctors most doctors know nothing about it.

Kendall went into surgery today.  Today's she's having a "bladder diversion created through her abdomen" which sounds insane, doesn't it?  I cant keep track of how many surgeries she's had or how many times she's been in the hospital.  I've cried in despair over the bad news and rejoiced with the good.  All we can do is hope.  And, there is hope.  She went from being a teeny, tiny baby full of tubes and unable to eat, to a walking-talking 4 year old who can keep up with her three big sisters.

Terra and Ben with Kendall, Karissa, Kealey and Kendall is on Ben's lap.  Photo by:  2 Sis Photos.
Our nephew, Elijah, who is not Kendall's brother because he's from Dan's other sister, Noelle, also has mitochondrial disease.  Elijah has a lot of the same "quirks" that Dan had as a child and still suffers from, therefore, Dan may or may not have some form of Mitochondrial disease.  I wanted to find out why there are varying degrees of Mitochondrial disease.  Why Kendall has feeding tubes and therapy and is constantly in and out of hospitals and emergency rooms and why Elijah and Daniel seem somewhat healthy.  Here's what I found [via United Mitochondrial Disease Foundation].  I've bolded the important parts.
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. 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.
It's a complicated disease and it's taking many lives.  It is critical that we tell the UMDF story & Kendalls' story to a much broader audience, to raise awareness and to hopefully make this disease more recognizable among the medical community and policy makers.  I'd like to encourage you to find out more about Mitochondrial Disease; that you would go to the UMDF site and join their network to learn more about this disease.  You can decide what type of information you'd like to receive - from "localized event information" and volunteer opportunities to just simply receiving the quarterly newsletter to keep abreast on this disease and what the future may look like for its 1 in every 200 affected individuals.  

There is hope.

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