Tragic 11 month old’s parents Charlie Gard were set up to address MPs on a bill that would help families avoid having to go to court hearings over their children’s hospital care.
Connie Yates and Chris Gard support a bill that, if passed, will give parents more say in how their children are treated.
The couple say they hope it will stop other families from enduring grueling legal battles like they did.
They will speak with MPs amid proposed rule changes that could make ‘Charlie’s Law’ a reality by the end of 2023.
Their family gained international attention in 2017 when they fought to continue treatment for 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, support a proposed law change that would give parents more say in how their children are treated in the hospital
The couple gained international attention when they were brought before the Supreme Court by bosses at Great Ormond Street Hospital after disagreeing with doctors who wanted their son off the ventilator. Here they are pictured speaking to the media in Queen Square, London, in July 2017
The couple received support from around the world as they battle to enable their son to continue treatment 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 brain damage, requires Charlie to be placed 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 die with dignity.
However, his parents disagreed and raised £1.3 million for possible treatment in the United States, with their plight even drawing the attention of then US President Donald Trump.
After a lengthy lawsuit, judges ruled that doctors should shut down Charlie’s life support, and he sadly passed away on July 28, 2017.
Since then, Connie and Charlie have had another son – Oliver – and have moved to Inverness, Scotland, but they say they don’t want another parent to go through what they went through.
They will contribute to a revision of health rules by the House of Commons, which could include new rules that will allow parents to have a greater 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 treatment in the US that could have saved him, but we weren’t allowed to take him because the courts blocked it.
“We still don’t understand how that could have happened. So we made it our goal to change the law for Charlie so that 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 when they tried to save their son
Chris Gard and Connie Yates, pictured here outside the Supreme Court in 2017, say they still don’t understand why they weren’t allowed to bring their son to the United States for treatment
“This review gives us the greatest 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 thing is to prevent other families from having to fight with the hospital about what is good for their own child.
“It may be too late for Charlie, but we can’t let this happen to other kids.
“We couldn’t understand, and still don’t, why we couldn’t have the last word on our son’s future. We were just a normal couple with a baby. Why did we have to go to the Supreme Court?’
Since Charlie’s death, the couple have had another son, with his brother Oliver born in 2020. Pictured is Connie with Oliver when he was one week old
The couple, who were supported out of court by family, friends and supporters in 2017, have since shared the Charlie Gard . Foundationthat helps people dealing with rare genetic disorders.
They also had another son, Oliver, who is now almost two years old and was born the day after his brother’s birthday.
The couple, who have pictures of Charlie all over the house, say they are heartbroken that Oliver will never meet his big brother.
Speaking to the Daily Mail shortly after Oliver was born in 2020, Chris said: “It’s bittersweet because of course we would have loved to see them meet in person, but when Ollie reaches the right age, he will definitely find out more.” about his older brother. and what a hero he was to us.’