Charlie’s legacy
Parents use £1.3m donations to help sick children
THE parents of Charlie Gard will use the £1.3million donated for his treatment to help other children with rare diseases.
Yesterday Connie Yates and Chris Gard said the Charlie Gard Foundation would support children with rare genetic conditions like his.
They also pledged it would be a ‘hub of information’ to help parents of sick children to get access to expert medical treatment.
The couple said the foundation would be ‘a lovely legacy’ to their tragic baby son.
Charlie died on July 28, shortly before his first birthday, after a lengthy court battle over his treatment for a rare inherited disease.
His parents wanted to take him to America for an experimental treatment and raised more than £1.3million in public donations to pay for it, including tens of thousands from Daily Mail readers.
More than 84,000 people donated to the fund after details of the family’s plight emerged.
But a High Court judge ruled the treatment was not in Charlie’s best interests after doctors from Great Ormond Street Hospital warned there was no evidence it would succeed, and that Charlie had suffered severe brain damage. His genetic condition – infantile onset encephalomyopathy mitochondrial DNA depletion syndrome – sapped energy from his muscles and left him unable to move or breathe unaided, although his parents insisted he continued to respond to them.
Miss Yates and Mr Gard, from Bedfont in south-west London, said the Charlie Gard Foundation would help other youngsters with mitochondrial diseases or rare childhood illnesses.
In a statement on their fundraising website, they said: ‘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 con-
‘Honour the life of our little warrior’
tinue to support us in honouring the life of our little warrior as he helps other poorly children and their families.’
The couple launched their appeal earlier this year on a GoFundMe page, and said the site had donated £10,000 to the foundation. All previous donations to the page and any new donations will go to the foundation.
Charlie’s parents have yet to announce a date for his funeral, but previously said he would be buried with his two ‘beloved toy monkeys’. During their court battle, Mr Gard poignantly brought one of the cuddly toys to each court appearance.