The parents of tragic Charlie Gard have moved a big step closer in their battle 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 they experienced, reports the Mirror. Now they have 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. The family have moved from west London to Inverness – where Connie’s family live.
She said: “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. We love him so much and he’ll never be forgotten.”
Chris added: “Finally it feels like we are close to helping Charlie change history. We are over the moon. 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 so no other family has to go through what we did.”
Chris, 38, and Connie, 36, who are planning their wedding in Scotland, were talking 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 on August 4, 2016, but at five weeks his parents were informed 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 the couple raised £1.3million to send him there.
But doctors at Great Ormond Street Hospital, London, said there was no hope and the lad should be able to die with dignity. After a series of court cases over three months, judges agreed 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.”
Since then, the couple have had another son. Oliver, who is nearly two. He was born the day after Charlie’s birthday, and shares mannerisms with his elder brother.
Connie added: “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.”
Chris said: “When Connie found out she was pregnant, we were sick with worry. The fact we have now had a healthy child, have experienced a child walking for the first time, speaking his first words, is just beautiful.”
The couple will mark the fifth anniversary of Charlie’s death by releasing butterflies in his memory. Chris added: “The anniversary is always a sad day. But soon after is Charlie’s and Oliver’s birthday. We celebrate those more than ever.”
The couple used funds raised to set up the Charlie Gard Foundation, which supports sufferers of rare genetic conditions. Connie added: “We are appealing to other families to join us in our fight.
“We need them onside with us when we present the evidence for the review in October. It was too late for Charlie but it does not have to be late for others.”
Don't miss the latest news from around Scotland and beyond - Sign up to our daily newsletter here.
