Charlie Gard’s parents launch foundation to invest in research for sick children

The parents of baby Charlie Gard, who died after being at the centre of a High Court treatment battle, have launched a foundation to provide a “brighter future” for other sick children.

Connie Yates and Chris Gard (pictured) say the Charlie Gard Foundation aims to invest in research and provide support to families.

The couple launched the foundation on Friday and said they were keen to fund research projects.

Charlie died in July last year, a week before his first birthday.

Mr Gard and Ms Yates, who are in their 30s and come from Bedfont, west London, had asked the High Court to rule that Charlie should be allowed to undergo a therapy trial in New York.

Doctors at Great Ormond Street Hospital for Children in London said the therapy would not help and said life-support treatment should stop.

Mr Justice Francis ruled in favour of Great Ormond Street after analysing the case at hearings in the Family Division of the High Court in London.

Charlie’s parents failed to overturn the ruling in the High Court, Court of Appeal and Supreme Court.

They also failed to persuade European Court of Human Rights judges to intervene.

The couple raised more than £1.3 million to pay for therapy in America and said they wanted to establish a foundation with the donations.

Charlie suffered from a rare genetic condition, called mitochondrial depletion syndrome, which causes progressive muscle weakness and brain damage.

His parents say they want to raise awareness of the condition.

“Our vision is to enhance the quality of life for mitochondrial sufferers through innovative research, family support, and raise much-needed awareness for this devastating condition,” they said in a statement on the Charlie Gard Foundation website.

“Mitochondrial-related diseases kill more children than childhood cancers, and it’s our vision to change this statistic.

“Our aims are to deliver hope for a brighter future – and one day find that all-elusive cure – and ensure we provide mito sufferers with every opportunity to get the very best out of life.”

Copyright (c) Press Association Ltd. 2018, All Rights Reserved. Picture (c) Victoria Jones / PA Wire.