“What is Mitochondrial disease?” They ask as I begin to go into my spiel that I have rehearsed a thousand times before. I tell them, “Mitochondrial disease is a terminal, genetic condition in which the mitochondria that create all the energy in a person’s body fail to function properly. This leads to organ failure and eventually death as the disease takes over. It’s a disease with no surgery, no magic pill, no treatment, no chance of remission and worst of all, no cure.”
But is that really what it is? With every passing day, I begin to realize I can’t explain Mitochondrial disease. I can tell you all of the statistics but that would mean nothing unless you have experienced this disease for yourself. Mitochondrial disease is so much more than the statistics, the physical symptoms, and the medical terminology.
“So what really is Mitochondrial disease?” They ask.
It’s the parent who searches their child’s diagnosis on the Internet only to learn that there are no treatment options, but that doesn’t stop them from trying to find something to save their precious baby.
It’s the teenager who is labeled as lazy, even though their body doesn’t have the energy to keep their organs functioning, much less get out of bed in the morning.
It’s the bride who will never walk down the aisle.
It’s the young adults who had to drop out of college because their health is too unstable.
It’s the parent who wants nothing more than to be able to care for their own child, but can’t even care for their self.
It’s the child who will never get on the school bus for their first day of kindergarten.
It’s the boy who went from being a star high school athlete to a boy who can hardly walk on his own.
It’s the siblings who have to cope with the thought of their brother or sister leaving this earth to live in Heaven.
“So what really is Mitochondrial disease?” They ask.
It’s a disease that has changed the course of my entire life.
It’s a disease that has brought me so much fear and uncertainty.
It’s a disease that has tried to stop me from pursuing my dreams.
It’s a disease that has forced me to face my own mortality.
It’s a disease that has made me cry myself to sleep.
It’s a disease that has robbed me of my high school years.
It’s a disease that has left me in earth shattering pain.
It’s a disease that has and always will be apart of me.
Mitochondrial disease is heartbreaking. It’s ugly. It's scary. It’s not fair. It's a nightmare I will never be able to wake up from. The medical implications of this disease are only half my story. No one will be able to know what mitochondrial disease until they experience it for themselves because it is in that moment when they realize all the emotional and social implications of the diagnosis. As much as I want people to understand what I am going through, I am thankful they do not know, because if they did then that would mean they have to live with the same horrors I have experienced. I wouldn't wish that on anyone. While I know the average person will never be able to see the strain this disease can place upon a person, I hope this post is a start. From here on out you'll never be able to sit back and say you were unaware of a disease that rips babies from the arms of their parents, that claims the lives of bright and bubbly teenagers, and that forces children to grow up without their mom or dad.
This is Mitochondrial disease.
