The heart-breaking story of baby Charlie Gard, who recently died of a rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome, touched the lives of families around the world.
Although Charlie’s parents lobbied to transfer him from the U.K. to the U.S. for experimental treatment, they lost their battle when British courts ruled that prolonging his treatment would cause Charlie “significant harm.”
Sadly, Charlie died on July 28, 2017, just a week before his first birthday.
The tragedy of Charlie’s death may bring hope to other parents whose children are diagnosed with rare diseases. Using the $1.7 million they received in donations to help their son, Charlie’s parents have established a foundation to fund rare childhood disease research and provide information for parents, according to the Rare Disease Report.
“Too many children are losing their fight against rare medical conditions, which emphasizes the need for more research, and we hope we can help deliver this through Charlie’s foundation,” say Charlie’s parents.
According to Global Genes, there are more than 7,000 different types of known rare diseases today. There are 60 million people in the U.S. and Europe living with a rare disease. An estimated 350 million people worldwide suffer from rare diseases.
Although young Charlie lost his fight, his foundation will now help other children who suffer from mitochondrial diseases and other rare diseases, such as adrenoleukodystrophy (ALD) and familial hypercholesterolemia (FH).
