The parents of Charlie Gard, the 11-month-old boy who died last month after a long legal battle, have said they will use £1.3m donated by well-wishers to set up a foundation in their son’s name to help other children with rare diseases.
Chris Gard and Connie Yates announced their decision on a fundraising website. After the couple appealed for cash to cover his medical bills on the GoFundMe page more than six months ago, they received donations from more than 84,000 people.
“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 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.”
The couple said they intended to establish a hub of information for parents who may find themselves in a similar situation. “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.
“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.”
Charlie Gard had a form of mitochondrial disease, a condition that causes progressive muscle weakness and brain damage. Described as “perfectly healthy” when he was born, he was admitted to hospital at eight weeks and his condition progressively deteriorated.
His parents fought a five-month campaign to have him transferred from Great Ormond Street hospital in central London, where he was on life support, to the US for experimental treatment that they hoped could give a “meaningful life” to the boy, who was blind and deaf and could not breathe without a ventilator.
But doctors believed the experimental treatment would not work and would only prolong Charlie’s suffering, leading to protracted and increasingly acrimonious proceedings. The case made headlines around the world, with the pope and Donald Trump commenting on it.
Gard and Yates finally abandoned their legal battle in late July, saying it was too late to save Charlie, and he was transferred to a hospice where he died after having his life-support systems withdrawn.
Shortly thereafter, the archbishop of Canterbury spoke of his deep sympathy for the family and evoked the memory of his own daughter, who died when she was less than a year old. Justin Welby said any parent would “fight for the life of their child as long as they could”, adding: “We know what that’s like.”
