The Disease You've Probably Never Heard Of

This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email.
During Mitochondrial Disease Awareness Week many adorn the color green to raise awareness and support for the disease.
During Mitochondrial Disease Awareness Week many adorn the color green to raise awareness and support for the disease.

Mitochondrial Disease Awareness Week is celebrated by people globally, during the third week of September. Every year thousands of people ban together to bring awareness to this dreadful condition. During 2016, the dates fall on September 18th-24th.

As told by the United Mitochondrial Disease Foundation, mitochondrial disease is:

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.

Mitochondrial disease is more than just a textbook diagnosis, however, you can only learn so much from the medical definition of a disease. I could sit here and share all the awful statistics and facts about Mitochondrial disease and how it rips families apart, but that would mean nothing unless one experiences Mitochondrial disease on their own.

To describe Mitochondrial disease many within the community use this analogy to describe what it is like for someone who lives with this disease: Imagine taking out a car battery and replacing it with two double AA batteries. Obviously, the car is not going to function well if any at all, so the car becomes overworked very quickly. This is similar to what a person who has Mitochondrial Disease would experience on a daily basis. A person who has Mitochondrial disease does not have the appropriate amount of energy to make the person’s organs work as they should. Ultimately, the body will continue to be overworked trying to keep all of the organs functioning but in a person with Mitochondrial disease the problem only gets worse and the person’s organs will begin to fail.

Imagine seeing your child’s organs fail right in front of your eyes. Imagine being told your child has a rare disease, but there’s nothing you can do about. There is mo treatment, no magic pill and there’s certainly no cure. Imagine watching your child suffer in a world full of pain and fatigue. It’s a type of fatigue beyond what anyone could imagine. There’s no amount of sleep that could ever fix the experience pure exhaustion, from person’s body fighting so hard to survive. Parents watch their child’s body shut down in front of their eyes as their child’s organs begin to fail. Imagine watching a child endure painful procedures as they scream in pain. Everyone tells that child that everything will be okay and the pain will go away soon...but will it? Parents across the country must tell their children, their sister or brother will be entering the gates of heaven soon.The fear in those children’s eyes and the pain the will continue to experience for the rest of their lives. Every day there’s Mom and a Dad who are thankful that their child survived the night, but also another family grieving the loss of their child who didn’t make it through the night. This is the reality for so many families battling this awful disease...

My youngest brother and I are fighting this degenerative, genetic condition. Many of our organs have become dysfunctional and are slowly quitting on us. Imagine having a friend or family member who relies on IV pumps and tubes to keep them alive. It’s definitely not the best thing in the world. Our family was dragged into a nightmare we never wanted to be apart of. Our family doesn’t get to turn the other cheek and pretend like this horrible disease doesn’t happen to children, but it does. It happened to me. People feel like when they look away they can pretend like such thing doesn’t exist by family and thousands of others will never get the chance to look away. My family was drafted into a war we never wanted to be apart of but you can be damn sure that we will fight it until no family will ever have to endure the pain we have faced.

During Mitochondrial Disease Awareness Week I ask people across the world to team up with me and wear the color green to raise awareness. There is so much one can be to raise awareness, such as fundraisers, passing out green ribbons to spread the word, sharing my first-hand experience with this disease and most of all donate money to fund the great need for research to find a treatment to help people like my brother and me.

Portraits In Honor Of Rare Disease Day