Charlie Gard parents: We have watched Alfie Evans case unfold with heavy hearts

Charlie Gard (l) and Alfie Evans (r). Credit: Press Association Images

Charlie Gard’s mother has said she wants a “Charlie’s Law” which will prevent parents “experiencing painful and prolonged conflicts with medical professionals”.

Connie Yates said she and Charlie’s father, Chris Gard, have watched Alfie Evans’s case unfold with “heavy hearts”.

She said she wants a “platform for transparency and openness”.

Charlie died in July a week before his first birthday after being at the centre of a life-support treatment fight.

Mr Gard and Ms Yates, who are in their thirties and come from Bedfont, west London, had asked Mr Justice Francis to rule that Charlie should be allowed to undergo a therapy trial in New York.

Doctors at Great Ormond Street said the therapy would not help. They said life-support treatment should stop.

Mr Justice Francis ruled in favour of Great Ormond Street and said Charlie should be allowed to die with dignity.

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

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

“With heavy hearts we have watched as Alfie’s case has unfolded,” said Ms Yates, in a statement posted on Facebook.

“For those who have not been in a situation like this, it is impossible to understand the pain Tom and Kate are going through.

“When we were fighting for our son, Charlie Gard to be given a chance to try a treatment that could have improved his quality of life, we realised that cases like these would keep happening until the law was changed.

“Tragically, this has proven to be true.

“Since Charlie’s passing in July last year, we have been working with paediatric consultants, medical ethicists, senior lawyers, UK politicians and other parents who have suffered through similar situations as us, to try and propose a law that will prevent parents experiencing painful and prolonged conflicts with medical professionals.

“This involves addressing problems around the ‘best interests’ test as well as creating a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts.”

A foundation set up by Charlie’s parents is due to be launched in a few weeks’ time.

The couple raised more than £1.3 million to pay for therapy in America.

They said they wanted to establish a Charlie Gard Foundation with the donations received.

A statement on the Charlie Gard Foundation website says the foundation will be officially launched on June 1.

“The Charlie Gard Foundation aims to become one of the UK’s leading charities dedicated to fighting mitochondrial disease,” says the statement.

“The foundation raises awareness for the condition, invests in world-class research into viable treatments, and supports families whose lives have been touched by this incurable disease.”

It gives details of where “those who wish to support the work of the foundation” can donate money.