A Story from the Heart on Mitochondrial Disease for Saratoga Springs NY
In 2004 we ended up in Ellis Hospital because my son was having trouble breathing. He was 3 months old and it was one of the scariest times in my life. The doctors had concerns as Zachary's head was above average in the 75 percentile while his body was only in the 50 percentile. At first I was angry at the questions the doctor had asked me. I thought he was an idiot.
The doctor ran some tests and found abnormal results. At that second I did know what to do or say my mind was just racing. We were transfered to Albany Medical Center for more results. Albany Medical Center diagnosed my son with mitochondrial disease. Hearing the words "disease" felt as though someone had just put a knife in my heart. Questions just kept flowing from my mouth with no direct answers.
I still remember the last words of the appointment "I don't know how long your son will live most patients do not live past 5 years old, I don't know how severe the symptoms will be as every case is different." Mitochondrial Disease has recently been discovered and there is not a cure yet. I kept asking myself what did I do wrong? Why Me? Was it something I did? I know now it is nothing I did however I couldn't stop blaming myself. I don't know if I ever stopped.
What is Mitochondrial Disease?
Mitochondrial Disease is a results of parts of the mitochondria failing. The mitochondria provides of 90% of the body's need for life and growth. When the mitochondria fails less energy is generated through the cell. Mitochondrial Disease tends to affect children however adult onset has become more common.
Effects of Mitochondrial Disease?
Mitochondrial Disease tends to affect and cause damage to the brain, heart, liver, skeletal muscles, kidney, endocrine system, and respiratory system.
Mitochondrial Disease symptoms include loss of motor control, muscle weakness, gastro-intestinal problems, poor growth, cardiac disease, liver disease, diabetes, and more.
It's been five years and I consider myself and son to be very lucky. Although he has Mitochondrial Disease he is doing well. I am told he has a very mild case of Mitochondrial Disease. It takes him longer to learn some things and he is behind in speech but other than that he leads a normal life. I still have the challenge of others not understanding and putting him down but I pull through. I worry when my son gets older people he will have to deal with others making fun of him but right now he is the happiest child I know.