Hope for Charlie’s Law: Parents of 11-month-old Charlie Gard, who died in 2017, are set to present evidence to MPs on proposed rule that will help families avoid having to endure court hearing over children’s hospital care
- Baby Charlie Gard was born with a rare condition that caused him brain damage
- His parents, Connie Yates and Chris Gard, fought to continue treatment on him
- But a High Court judge ruled doctors were allowed to take him off life support
- Now they are backing proposed changes to rules around children’s hospital care
The parents of tragic 11-month-old Charlie Gard are set to address MPs on a proposed law that would help families avoid having to endure court hearings over the hospital care of their children.
Connie Yates and Chris Gard are backing a bill that, if approved, would give parents more say in how their children are treated.
The couple say they hope it will stop other families having to go through exhausting legal battles like they did.
They will speak to MPs amid proposed changes in the rules that could make ‘Charlie’s Law’ a reality by the end of 2023.
Their family came to international attention in 2017 as they fought to continue treatment on their son Charlie after he was diagnosed with mitochondrial DNA depletion syndrome.
Connie Yates and Chris Gard, pictured here with their son Charlie in March 2017, are backing a proposed change in the law that will allow parents to have more say in their children’s hospital treatmen
The couple rose to international attention when they were taken to the High Court by bosses at Great Ormond Street Hospital after disagreeing with doctors who wanted to take their son off life support. Here they are pictured speaking to the media in Queen Square, London, in July 2017
The couple received support from around the world during their battle to allow their son to continue treatmen for mitochondrial DNA depletion syndrome. Pictured are supporters of the family in central London in July 2017
This rare condition that leads to muscle weakness and causes brain damage, with Charlie having to be put on a life support machine at Great Ormond Street Hospital in London.
Doctors at the hospital told the couple they wanted to turn off the machine and that Charlie should be allowed to die with dignity.
However, his parents disagreed and raised £1.3 million for a potential treatment in the United States, with their plight even catching the eye of then US President Donald Trump.
After a lengthy court battle, judges ruled that doctors should be allowed to switch Charlie’s life support off, and he sadly died on July 28, 2017.
Since then Connie and Charlie have had another son – Oliver – and have moved to Inverness in Scotland, but they say they don’t want any other parent to go through what they did.
They will contribute to a Commons review of health rules, which could see new rules that will allow parents to have more say in how their children are treated and where this takes place.
It would also allow parents to ask for mediation and independent experts if they disagree with what hospital doctors decide.
Speaking to the Sunday People, they said if the proposed changes are approved their beloved Charlie will have ‘changed history’.
Chris said: ‘When our boy died, there was a treatment in the US which could’ve saved him, which we were prevented from taking him because the courts blocked it.
‘We still can’t get our heads around how that was allowed to happen. So we have made it our goal to get the law changed for Charlie, so no other family has to go through what we did.
The couple, pictured here with Charlie in 2017, say no parent should have to go through what they went through in trying to save their son
Chris Gard and Connie Yates, pictured here outside the High Court in 2017, say they still don’t understand why they weren’t allowed to take their son to the Unites States for treatment
‘This review gives us the biggest hope yet. We want Charlie’s name to go down in history as the little boy who really made a difference.’
Connie added; ‘The main point is to prevent other families having to battle with the hospital over what is right for their own child.
‘It might be too late for Charlie, but we can’t let this happen to other children.
‘We couldn’t understand, and still don’t, why we couldn’t have the final say on our son’s future. We were just a normal couple with a baby. Why did we need taking taking to the High Court?’
Since Charlie’s death the couple have gone on to have another son, with his brother Oliver being born in 2020. Pictured is Connie with Oliver when he was one week old
The couple, who were backed by family, friends and supporters outside court in 2017, have since set up the Charlie Gard Foundation, which helps people dealing with rare genetic conditions.
They have also had another son, Oliver, who is now nearly two years old and was born the day after his brother’s birthday.
The couple, who have pictures of Charlie throughout their house, say they’re heartbroken Oliver will never get to meet his big brother.
Speaking to the Daily Mail shortly after Oliver was born in 2020, Chris said: ‘It is bittersweet because obviously we would have loved them to have met in person, but as Ollie gets to the right age he will certainly find out about his older brother and what a hero he was to us.’
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