This Replicoin was created by GxProxy in memory of our son Austin who so unfortunately passed away at only 9 months of liver failure due to a rare mitochondrial disorder called Alper’s which we were not aware he had. Alper’s “only” affects one in roughly 200,000 babies who currently do not make it past their 10 year birthday; with so many passing before their first or second. With as rare as each specific mitochondrial disorder is; what is often overlooked is the fact there are over 400 different types of mitochondrial disorders and this number is growing every year; making mitochondrial disorders not so rare! “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.” (UMDF)
By creating this coin we hope to spread awareness as far as possible to as many people as possible. The goal of this travel bug is to travel all over the world spreading awareness and along the way if it meets a Mito Warrior or family member of, please take a picture with the travel bug and add your brief story for others to read.
If you would like to read Austin’s story please visit his Caring bridge site I have added below. I also included a link to the UMDF and the Seattle Children’s research guild, the people who made it possible to get a diagnosis only days before Austin passed of this terrible disease. Donations are welcome on each site and feel free to share local Mito research organizations you know about.
http://www.caringbridge.org/visit/austinwink
http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm
http://www.nwmito-research.org/childrens.jsp
Mitochondrial awareness week is always the last week of September but let’s keep it going year round!