The Charlie Gard Story

As a person living with a rare disease, I feel that it is my job to spread awareness about the disorder I live with everyday. While Mitochondrial disorders and other rare diseases do not receive as much attention as diseases like cancer, they are still extremely important. This is why I make it my life mission to advocate for those who are too sick to speak. My family and I strive to accomplish this through fundraisers and walks that raise money for research but that also spread awareness to those who may not already know about the disease.

This is why I would like to shed light on a baby that has recently made world news.

Charlie Gard is an 11 month old baby that is at the center of an international controversy between his parents and his medical team. Charlie has Encephalomyopathic Mitochondrial DNA Depletion Syndrome, which is a very rare Mitochondrial disease. The basis of the controversy is that the doctors want to take him off of the ventilator that is keeping him alive because they feel he may be in pain but the parents want to take him to the United States or Rome so that he can receive an experimental treatment.

This is a heart wrenching story that sheds light on how devastating Mitochondrial diseases can be for both the affected individuals and their families.

Written by Sydney Breslow