Charlie Gard’s parents to use £1.3m fund for charity

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Charlie GardImage copyright PA
Image caption Charlie had encephalomyopathic mitochondrial DNA depletion syndrome

Charlie Gard’s parents have announced they will use £1.3m donated by well-wishers to set up a charity foundation to help other children with rare diseases.

Chris Gard and Connie Yates announced their decision on a fund-raising website following Charlie’s death.

The couple had appealed for cash to pay for overseas medical treatment for their son.

More than 84,000 people donated money to the cause.

Charlie suffered from an extremely rare genetic condition causing progressive brain damage and muscle weakness.

The parents of the 11-month-old, fought a lengthy legal battle with Great Ormond Street Hospital (GOSH) to allow him to be taken to the US for treatment.

But they dropped their action after Professor Michio Hirano, the American neurologist who had offered to treat him, said it was too late for the treatment to work.

Charlie died on 28 July shortly before his first birthday.

Image copyright PA
Image caption Charlie Gard died on 28 July, after a lengthy legal battle

In a statement, his parents said: “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 emphasises the need for more research, and we hope we can help deliver this through Charlie’s foundation.”

They also outlined plans for the charity to provide “information for parents that may find themselves in a situation like ours.”

“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.

“We feel that the foundation will be a lovely legacy for Charlie, and we hope that you will all continue to support us in honouring the life of our little warrior as he helps other poorly children and their families.”

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