THE parents of little Charlie Gard say BBC drama Best Interests left them reeling after some of the drama’s most heartbreaking scenes mirrored their own devastating struggle.
Chris Gard and Connie Yates revealed how watching the new series – about a family torn apart by the decision to withdraw care for their terminally ill daughter – took them back to their own grief in 2017.
Charlie was born in August 2016 and was diagnosed with mitochondrial DNA depletion syndrome – a rare genetic condition that causes muscle failure and brain damage.
His parents reveal they – like characters Andrew and Nicci, played by Michael Sheen and Sharon Horgan – also discovered doctors wouldn’t fight to save him when a palliative care worker introduced himself at a meeting.
They are now campaigning for Charlie’s Law, which would prevent the NHS from taking parents of terminally ill children to court – and hope scenes like this one are a thing of the past.
And they hope that watching a fictional family being torn apart in a similar court case will help them garner support for Charlie’s Law.
Speaking from their home in Inverness, which they share with Charlie’s little brother Oliver, now two, Connie, 37, said: “Some of the scenes really blew my mind.
“There are so many moments where it actually felt like looking in a mirror, it was a real punch in the gut.”
Fans have been captivated by the four-part drama, which concludes tonight, as a couple become embroiled in a legal battle over their daughter Marnie’s right to die.
The story of the argument between Marnie’s parents and the doctors, who believe it is in the child’s “best interests” to be allowed to die, is eerily similar to the tragic case of Charlie.
And one touching scene, in which a palliative care doctor is invited to a family meeting, was art in imitating life — since Charlie’s parents went through almost exactly the same thing.
Connie said: “When Charlie was diagnosed we were invited to the hospital for a meeting with many specialists.
“They walked around the room and introduced themselves and a man said he was from the palliative care team.
“We didn’t even know what condition he was in and it already seemed to us that they had already decided his fate.
“The rest of the meeting was completely blurry, our heads spinning.
“No one should let such bad news be delivered. It was really cruel and unnecessary. There needs to be more respect for parents.”
Chris, 38, added: “Watching that game on TV felt like a punch in the stomach.”
The couple fought back tears as they explained how “Best Interests” reflects other elements of their own struggle.
Connie says, “The scene where Nicci upsets Andrew for crying at her daughter’s bed really hit me hard.”
“We had exactly the same rule. Coming out of court after losing another appeal, we sobbed all the way to the hospital but told ourselves, “Don’t cry in front of Charlie.”
“We snuck into the bathroom sobbing – but like Andrew on the show, we both stood by Charlie’s bed crying.
“The biggest difference for us is that Charlie was conscious the whole time and responsive to us – he looked up to us and we just struggled to keep it all together.
“Those scenes with the two of them on the court steps brought everything back to our minds.
“The process of going to court was terrifying. Everything in our lives felt so out of control at that point, but when we walked into the courtroom, we felt like fraudsters.
“It really felt like we were living in a movie back then. But that was our reality for nine months.”
Connie and Chris’ battle with doctors made headlines around the world in 2017.
Although several doctors from around the world offered Charlie experimental treatment and the family raised more than £1.3million in donations, London’s Great Ormond Street Hospital prevented them from leaving Charlie.
They argued that it was not in his best interests to do so – despite offers of support from the Pope and then-President Donald Trump.
Chris says: “Now we want to do what we can to help others. Our main goal is to prevent cases from going to court.
“It’s disrupting the family, costing the NHS a fortune and preventing everyone from doing what they need to do most of all – look after this child.”
“We had never been in a courtroom before, we had no idea what was going on – it just felt so incredibly unfair.
“Looking back now, I don’t know how we actually got through it.”
Charlie’s Lawcurrently under consideration by the government in disputes over the care of seriously ill children would prevent cases from going to court by encouraging mediation between doctors and parents.
It would give parents the right to transfer their child to another hospital if they were offered treatment elsewhere, which the hospital can currently refuse.
Connie said: “We would never want to do anything that isn’t in the child’s best interest, but as the program shows, we often all have different ideas about what their best interest is.”
“We have worked very hard with doctors, including those who fought us with Charlie, to find a solution to this problem.
“We suggest that parents should be allowed to try other treatment options as long as it does not cause significant harm.
“We know dozens of families go through this every year and we want to do whatever we can to help them.”