Hope for Charlie’s Law: Parents of 11-month-old Charlie Gard, who died in 2017, get backing for new rule to avoid families having to endure court hearing over children’s hospital care
- Parliament to vote on ‘Charlie’s Law’ giving parents more rights over treatment
- Charlie Gard was diagnosed with mitochondrial DNA depletion syndrome
- Charlie’s parents Connie and Chris were offered pioneering treatment in the US
- Doctors had denied Charlie’s parents permission to take him abroad
A new law inspired by Charlie Gard will be put before Parliament today, aimed at sparing other families from bitter courtroom clashes with doctors.
Connie Yates and Chris Gard, who lost their 11-month-old son in 2017, have won the backing of prominent peers, doctors and lawyers to fight for what is being called ‘Charlie’s Law’.
If the proposal is backed by Parliament, the parents of sick children who disagree with doctors on life-and-death decisions will have more rights over treatment.
When they lost their final appeal – and the US doctor said it was too late to start treatment – Charlie was taken off life support and died on July 28, 2017. Miss Yates and Mr Gard vowed that his legacy would be to help other families in similar situations. The result is Charlie’s Law, which includes a ‘significant harm’ test
Charlie was born seemingly healthy in August 2016, but at two months was diagnosed with mitochondrial DNA depletion syndrome – a rare condition that saps energy from the muscles and brain.
Doctors at Great Ormond Street Hospital in London said there was no hope and wanted to withdraw life-support, but Charlie’s parents were offered pioneering treatment in the US.
Thousands of well-wishers – under the banner of ‘Charlie’s Army’ – raised £1.3million to pay for it. But doctors denied Charlie’s parents permission to take him abroad, leading to showdowns at the High Court, Court of Appeal, Supreme Court and European Court of Human Rights.
When they lost their final appeal – and the US doctor said it was too late to start treatment – Charlie was taken off life support and died on July 28, 2017.
Miss Yates and Mr Gard vowed that his legacy would be to help other families in similar situations. The result is Charlie’s Law, which includes a ‘significant harm’ test.
This would mean that if a treatment were available at another hospital, the parents should be allowed to try it unless it would cause the child ‘significant harm’.
The law would also compel hospitals to offer mediation in disputes before resorting to the courts.
It is being championed by a string of senior doctors – including some who were once opposed to Charlie’s parents. The proposals could become law later this year, as part of the Access to Palliative Care Bill, if the Government grants parliamentary time.
Thousands of well-wishers – under the banner of ‘Charlie’s Army’ – raised £1.3million to pay for it. But doctors denied Charlie’s parents permission to take him abroad, leading to showdowns at the High Court, Court of Appeal, Supreme Court and European Court of Human Rights [File photo]
After Charlie died, Miss Yates and Mr Gard, who live in Bedfont, south-west London, used the donations to set up the Charlie Gard Foundation to help other families.
Miss Yates, 33, said: ‘I have been contacted by dozens of parents who cannot agree with doctors over the treatment for their sick children. They quickly find themselves locked in painful disputes, some of which end up in court.
‘Charlie’s Law would put a stop to this. These situations are bad for doctors, bad for parents and bad for the reputation of the NHS.’
Mr Gard, 34, said: ‘In Charlie’s final hours, I made some promises to him, ones I will never break, and among them was that we would go on fighting in Charlie’s name to help other children. This would be Charlie’s legacy and I wanted him to know it.’
Baroness Hollins, a former president of the British Medical Association, said: ‘This has my full support and that of many colleagues from all sides of the House.’
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