The parents of Charlie Gard have confirmed plans to set up a foundation to help seriously ill children, saying the charity will honour the life of their “little warrior”.
In a post on their website charliesflight.org, Chris Gard and Connie Yates said the £1.3m raised by donors to pay for their son’s treatment before he died would now go towards setting up The Charlie Gard Foundation.
The charity will help youngsters with mitochondrial diseases and rare illnesses, and their families.
“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,” the couple said.
Announcing that the charity would be set up “in the following weeks” they said that “too many children” were losing the fight against rare medical conditions, “which emphasises the need for more research” – something they hope to deliver through the foundation.
The aim is for the charity to become “a hub of information for parents that may find themselves in a situation like ours”, they said.
“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.”
Charlie was seemingly a “perfectly healthy” baby when he was born on 4 August last year, but was taken to hospital at just eight weeks old after he began losing weight and strength.
His fight against mitochondrial depletion syndrome, an inherited disease so rare that Charlie was only the 16th person in the world to be diagnosed with it, generated headlines around the world as his parents fought a lengthy legal battle to have him treated in the US with an experimental therapy.
The couple set up a crowdfunding page to pay for his care abroad and took their fight through the courts.
However, they ended their legal battle on 24 July after attempts to take him to the US were blocked by doctors and judges.
Charlie died in a hospice on 28 July, a week before his first birthday, after having his life support withdrawn.
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