Chris Gard and Connie Yates, the parents of 11-month-old Charlie Gard who died last month after being diagnosed with a rare mitochondrial condition, intend to set up a foundation in their son's name to help children with rare medical conditions and their families.
In an update on their website, the couple said The Charlie Gard Foundation will support "other children with mitochondrial diseases and rare childhood illnesses" and serve as a hub of information "for parents that may find themselves in a situation like [theirs]."
"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," the couple wrote.
All of the approximately $1.58 million raised through the couple's GoFundMe page will go directly to the foundation. The GoFundMe organization also agreed to donate $11,740 to the foundation.