Less than a month after 11-month-old Charlie Gard passed away, his parents have announced that they are about to launch a foundation aimed at helping other children with mitochondrial and other rare childhood diseases.
Writing on their website, CharliesFight.org, Connie Yates and Chris Gard, the parents of Charlie Gard, say they believe the best legacy for Charlie will be to bring hope to others who, like them, find themselves in a desperate struggle to save the life of a seriously ill child.
Charlie suffered from a rare genetic disorder known as mitochondrial DNA depletion syndrome that causes extensive brain damage and muscle failure. By the end of his life, Charlie was blind, deaf, and unable to breathe on his own. His parents fought for months for the right to try an experimental treatment on their son until his condition deteriorated beyond help. He died on July 28, just a week shy of his first birthday.
“Our beautiful Charlie has been blessed with hundreds of thousands of supporters from around the world. We are so incredibly grateful for all your continued love and support, and would like to take this opportunity to advise you of what we shall be doing with the money raised for Charlie’s cause,” the couple wrote.
“In the following weeks we will be setting up The Charlie Gard Foundation: a foundation that will help other children with mitochondrial diseases, and rare childhood illnesses. 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.”
In addition to providing funds, the foundation will also become a hub of information for parents who find themselves in situations similar to theirs, where they were fighting both the hospital and the government for the right to determine the proper care for their child.
“There needs to be more clarity for parents about parental rights when it comes to making life-saving decisions about their children. Access to medical treatment, and expert clinicians, should never be denied if funds are available. We will be looking at ways in which we can help make things clearer for families and hospitals alike.”
They also announced that gofundme.com, the website that enables people to raise money for a variety of causes, was so touched by Charlie’s plight that they donated 10,000 pounds ($12.8K) to the foundation.
“A wonderful gesture from the team, and we are extremely grateful for their generosity!” the couple wrote.
“We feel that the foundation will be a lovely legacy for Charlie, and we hope that you will all continue to support us in honoring the life of our little warrior as he helps other poorly children and their families.”
All existing donations from the family’s gofundme account – and any new donations – will now go toward Charlie’s Foundation.
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