Charlie suffered from mitochondrial depletion syndrome, a rare genetic disease. He died July 28 after his parents ended a monthslong legal battle seeking permission to bring Charlie to the United States for an experimental treatment. American doctors said too much time had passed for the treatment to have any hope of success. Charlie died just a week before what would have been his first birthday.
The British hospital where Charlie was treated sought for months to remove his life support so he could “die with dignity.”
The case gained international attention after Pope Francis and President Donald Trump offered their support to Charlie’s cause.
According to their GoFundMe page, the couple raised almost $2 million in an effort to seek treatment for Charlie.
In a written statement on their website, Gard and Yates wrote, “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 said that in the coming weeks, they will use the funds they raised to establish 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,” the couple said.
Gard and Yates said they want the foundation to serve as “a hub of 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,” they said. “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 said that they believe 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.”
The couple added that GoFundMe was “so touched by our cause” that they donated an additional £10,000 — nearly $13,000 American — toward Charlie’s foundation.
“We are extremely grateful for their generosity,” Gard and Yates said.
The announcement was signed “The C Team”: “Connie, Chris and our angel Charlie.”
Read the full announcement below: