Charlie Gard foundation for children to be set up using well-wishers' donations of £1.3 million

Charlie Gard
Tuesday 15 August 2017 at 3:37pm

Charlie was born with a rare genetic disease

Charlie Gard's parents have said they will use £1.3 million donated by well-wishers to set up a "Charlie Gard Foundation" which will help children with rare diseases.

Chris Gard and Connie Yates announced the decision on a fund-raising website following Charlie's death.

Charlie was born with a rare genetic disease called mitochondrial depletion syndrome which caused progressive muscle weakness and meant that he was deaf and unable to cry.

His parents fought a five-month court battle with doctors from Great Ormond Street Hospital for permission to fly him to the US for experimental treatment not available in the UK.

But a High Court judge ruled in favour of the hospital and said Charlie should be allowed to die with dignity and Charlie died on July 28, just days before his first birthday.

The couple had appealed for cash to cover Charlie's medical bills on a GoFundMe page - more than 84,000 people donated.

Connie Yates and Chris Gard announced the decision following Charlie's death. Credit: PA

In a statement on the GoFundMe page, Charlie's parents said:

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. 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. We also intend on becoming 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. 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.

The couple said GoFundMe had given #10,000 towards the foundation."It ... gives us great pleasure to announce that GoFundMe.com have been so touched by our cause that they have kindly donated £10,000 towards Charlie's foundation," they said.

"A wonderful gesture from the team, and we are extremely grateful for their generosity.

"All existing donations from our GoFundMe fundraising account - and any new donations - will now go towards Charlie's foundation."