Sitting down nervously to watch new BBC1 drama Best Interests, Connie Yates and Chris Gard found themselves back at the centre of their ordeal six years ago.
Like the family in the four-part series, they had to fight the NHS in a series of heartbreaking court battles for the right to take their baby son out of hospital for potentially life-saving treatment.
Connie and Chris, who lost Charlie in 2017 to a rare genetic condition, told the Mirror how the drama sparked emotional flashbacks after haunting similarities with their experiences.
They also claim they tried to contact the production company of the drama – which stars Michael Sheen and Sharon Horgan as distraught parents – to offer their insight but it declined.
Connie, 37, said: “Watching Best Interests has been quite triggering.
“I said, ‘Let’s record it and watch it when we’re ready’. But seeing it this week takes you back with everything we went through with Charlie.
“Everything from the beeping of the monitors, the media scrums outside court, the tough discussions with doctors and those difficult days sitting at Charlie’s bedside.”
Since Charlie’s death, Connie and Chris have campaigned for parents’ rights surrounding their children’s care.
Last year a proposed Charlie’s Law forced an independent review into current legislation that ends in October.
Connie and Chris are on a crusade to recruit families who have clashed with the NHS to lend their voice to the cause.
They want to change laws to give parents more say in kids’ treatments and to prevent expensive legal fights.
Chris, 38, said: “We want to make sure others don’t go through the hell we went through so since his death we have campaigned non-stop and it’s been hard.
“The system is broken as people watching Best Interests will see.
“We need to stop cases like ours going to court in the first place.
“Our dream is the review finds in our favour and new laws in Charlie’s name will give more power to parents.”
Charlie’s story horrified the world in 2016 and 2017. He died from a rare condition which causes progressive brain damage and muscle failure, a week before his first birthday.
Charlie was just eight weeks old when he first went into hospital. He was moved to London’s Great Ormond Street Hospital, where he was diagnosed with mitochondrial DNA depletion syndrome.
The family set up a GoFundMe page, raising £1.3million, and gave a petition with 350,000 signatures supporting their case to GOSH.
Doctors told the parents they required any external treatment to be sanctioned by a judge. There were five legal cases from the High Court to the European Court of Human Rights.
At each turn, judges agreed Charlie’s life support should be turned off and he be allowed to die with dignity.
The couple had wanted to take their son to the US for nucleoside bypass therapy but GOSH said Charlie had irreversible brain damage.
Judges ruled it was in Charlie’s best interests to die because he may be suffering and the proposed experimental treatment was “futile”.
Charlie died three days after the last hearing when his parents consented to switching off his life support.
Best Interests, with the final two episodes airing at 9pm on Monday and Tuesday, follows a family like Charlie’s. Their daughter Marnie, played by Niamh Moriarty, is taken to hospital where medics diagnose a rare form of muscular dystrophy. It tracks NHS plans to withdraw treatment of the brain-damaged girl in a coma and the fight by mum Nicci (Horgan) and dad Andrew (Sheen) to get treatment elsewhere.
In the second episode Nikki agrees to go to court. But the series begins with the family enjoying a happy life before tragedy strikes, something that resonates with Chris and Connie. Connie said: “Having Charlie was the best day of our lives.”
But at eight weeks, after noticing he had fallen below his birth weight of 8lb 3oz, Charlie was taken to West Middlesex Hospital for tests.
Chris said: “We didn’t think Charlie would never come out of hospital just like the girl in the drama.
“You’re watching it and your mind can’t help but go back to that dreadful time. There were certain things that triggered a bit of PTSD. Little things like where the father started crying and the mum said, ‘No crying at the bedside’.
“We had the same rule – we wanted positivity around Charlie. The mother, that never-say-die attitude, fight-ing for every last thing. I see that in Connie.”
Connie added: “One thing that struck a chord with me was when the hospital tell the parents they favour a particular course of action and they had palliative care in the room and it was a shock to the parents.
“And that happened to us. It shouldn’t be done in that way.”
But there were also things that did not add up for Chris and Connie.
Connie said: “The mum seems to want to keep her daughter alive and the dad is implying the best thing would be to let her go. Me and Chris always had the same opinion.”
On Monday, Chris and Connie face a key meeting as they give evidence to the Nuffield Council on Bioethics.
It is carrying out the review into the laws the pair want changed.
Chris explained: “We will just tell our story. We work with MPs. We have worked with parents, lawyers and doctors to frame Charlie’s Law.”
A lot has changed in six years for Connie and Chris. They have set up the Charlie Gard Foundation to help other families.
They also also moved from West London to Scotland for a new life and their main focus is Charlie’s little brother Oliver, who is three next month.
Connie said: “It’s very different here. There is a lot more green space and it has been a great place to bring up a child. It’s a nice life.
“Oliver has given us a reason to smile again.”
Chris added: “He makes us laugh every single day. He really is such a character. He’s a joy to be around.
“It’s such a shame he didn’t get to meet his big brother but he knows about him. I’ve a T-shirt with Charlie’s face on and he always says ‘Charlie’.
“He still loves looking at pictures of him around the house. We’ll never forget our other beautiful boy.”
* To get in contact with Connie and Chris to add your voice to the review, visit thecharliegardfoundation.org.
