The parents of Charlie Gard, a British infant, who died on July after a legal battle over whether his case warranted special medical treatment, are planning to set up a foundation for children with rare diseases.
The family will start The Charlie Gard Foundation using money raised for the terminally-ill baby’s treatment, parents Connie Yates and Chris Gard wrote on their website.
The website said: “We also intend on becoming a hub of information for parents that may find themselves in a situation like ours.
“We will be looking at ways in which we can help make things clearer for families and hospitals alike.’’
The family had raised more than 1.3 million pounds (more than 1.7 million dollars) for Charlie’s treatment, according to crowdfunding website gofundme.com.
The 11-month-old, widely known as Baby Charlie, died in hospice on July 28 after a long legal battle between his parents and doctors at London’s Great Ormond Street Hospital.
Charlie suffered from a rare genetic condition called mitochondrial DNA depletion syndrome that causes progressive muscle weakness and had left him with brain damage and unable to breathe without a ventilator.
The parents had fought for five months for him to receive experimental treatment in the U.S., before giving up their legal battle.
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