We’re close to helping Charlie change history
Big step forward in parents’ battle
THE parents of tragic Charlie Gard have moved a big step closer to winning their fight for a law change to prevent other families suffering their agony.
Connie Yates and Chris Gard want a bill to give parents a bigger say in the treatment of their children.
They believe it will prevent expensive, time-consuming legal battles like the one they experienced.
And they have now revealed Government chiefs have agreed to a Commons review of health rules to make room for Charlie’s Law in October. If approved, new legislation could be in place as early as next year.
Chris said yesterday: “Finally, it feels like we are close to helping Charlie change history.
“We are over the moon and feel like we are almost there. When our boy died, there was a treatment in the US which could’ve saved him, which we were prevented from taking him to 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.
Chance
“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.”
The law will give parents more input on treatment and where it can be delivered – and grant early access to mediation and independent experts if they are unhappy with a hospital’s decision.
Connie said: “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.”
Chris, 38, and Connie, 36, were talking shortly before the fifth anniversary of their boy’s death on July 28.
He died from a rare genetic condition a week before his first birthday – sparking an outpouring of sympathy around the globe.
Charlie appeared to be perfectly healthy when he was born on August 4, 2016 – but at five weeks they were told he was profoundly deaf. Within a few weeks his health problems mounted and he never left hospital again.
Charlie was diagnosed with mitochondrial DNA depletion syndrome, which causes progressive muscle weakness and brain damage. Connie found a potential treatment in the US and
We don’t want any other family to suffer
what we did
they raised £1.3million. But doctors at Great Ormond Street Hospital, London, said there was no hope and he should be able to die with dignity. And after a series of court cases over three months, judges agreed that his life support should be switched off.
Connie said: “We thought we’d be in America within days but instead we were in a courtroom. We couldn’t understand, and still don’t, why we couldn’t have the final say on our son’s future. All we wanted to do was give
Charlie a chance. We were just a normal couple with a baby. Why did we need taking to the High Court?”
Since then, the couple have had another son and moved from Bedfont, West London, to Inverness in Scotland. They say Oliver, who is nearly two and was born the day after Charlie’s birthday, has mannerisms in common with his older brother.
Connie said: “They both do this thing with their pinky finger. It’s nice to see what Charlie would look like as he got older through Oliver.
“We have pictures all over our home of Charlie. Oliver will point to the pictures and say ‘Charlie’ and ‘brother’. We call Charlie his big brother.”
Chris said: “When Connie found out she was pregnant, we were sick with worry. The fact that we have now had a healthy child, have experienced a child walking for the first time, speaking his first words, is beautiful.
“Every milestone Oliver has hit, we just feel so lucky that we’ve been able to see him progress and grow.”
The couple are planning their wedding and Connie said of their new home: “It’s wonderful here. There’s so much more space. Our home is still covered in pictures, handprints and footprints of Charlie. It’s like a shrine to him and we feel close to him. He’ll never be forgotten.”
The couple will mark the fifth anniversary of Charlie’s death by releasing butterflies in his memory.
Chris said: “The anniversary is always a sad day. But soon after is Charlie’s and then Oliver’s birthday.
We celebrate those more than ever.”
Their Charlie Gard Foundation supports sufferers of rare genetic conditions. Connie said: “We are appealing to other families who feel like we have to join our fight. We need them with us when we present the evidence for the review in October. We need your support.
“As a parent, you really do not want to have to go to court and spend three months there when all you want to do is give your child a chance of living when you are up against the clock.
“We’re nearly there. It was too late for Charlie but it does not have to be late for others, so we need the change.”
feedback@people.co.uk To donate, visit thecharliegardfoundation.org