Excited toddler Oliver Gard points at a picture of his sibling and squeals: “Charlie... brother!”
The delightful chirrup warms the hearts of his parents, who see so much of their first son in little Oliver.
It is five years since desperately ill Charlie died after dad Chris Gard and mum Connie Yates lost a court fight to have his treatment extended.
Today, after unimaginable pain, they have a new life in Scotland, are planning their wedding, have the joy of being parents again – and are still campaigning in Charlie’s name.
The couple have won a landmark victory in the battle for a law change to prevent other families suffering the agony they went through.
MPs will review proposals to give parents a bigger say on treatment and Charlie’s Law could be in place this time next year.
The couple declare: “It’s our biggest step forward yet.”
As they speak, Oliver plays happily. He is the spitting image of Charlie – and the mannerisms are familiar too.
Connie, 36, says: “There are such similarities. Charlie always had a tendency to stick his little pinky finger out and Oliver does the same.
“It’s beautiful to see Charlie running through Oliver’s personality – and nice to see what Charlie would look like as he got older through Oliver.
“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.
“Oliver will point to the pictures and say ‘Charlie’ and ‘brother’ and stuff like that. We call Charlie his big brother.”
Chris adds: “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.
“Every milestone that Oliver has hit we just feel so lucky that we’ve been able to see him progress and grow.”
As parents once again, a new start has come in Inverness – where Connie’s family live – and the couple work for the foundation they set up in their son’s name.
On July 28, the anniversary of Charlie’s passing, they will release butterflies in his memory.
He died from a rare condition causing brain damage just a week before his first birthday, August 4. Oliver will be two on August 5.
Connie adds: “Oliver will be at the butterfly release, as he was last year. We were always a bit scared to have another baby in case it happened again, but it’s as if this was Charlie’s way of saying ‘It’s going to be okay this time, Mummy and Daddy’. Charlie will always be a massive part of both ours and Oliver’s life.
“When the time is right, Oliver will learn all about his big brother’s life and how grateful we both are to have had two wonderful little boys.”
Chris, 38, says: “The anniversary is always a sad and sombre day. But very soon after is Charlie’s and then Oliver’s birthday. We celebrate those more than ever.”
The couple got engaged four years ago. Connie recalls: “We were visiting family in America when Chris proposed. For a lot of couples, the loss of a child can destroy a relationship as the trauma on both sides can be too much to bear.
“But for us, it only made us stronger. We were together on the best day of our lives, the day our beautiful Charlie was born. We cried with happiness.
“And we were together the worst day of our lives, the day we sadly lost him. If we can go through all of that and come through it together, then we can get through anything.
“And we did get through it. Thanks to that we have our precious memories of Charlie and his beautiful little brother Oliver to show for it. Our boys are our world and we are so blessed.
“Inverness is beautiful – the rolling hills and scenery are wonderful. The pace of life is a lot slower and we felt Oliver would have a better upbringing here than in the hustle and bustle of London, in a one-bed flat.”
The couple talk movingly of losing Charlie and reveal that a Commons review of health rules in October will consider a proposed Charlie’s Law.
Former postman Chris says: “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 have saved him.
“We were prevented from taking him 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.
“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.”
A new law would give parents an increased say in treatment – and where it can be delivered. It will grant families early access to mediation and independent experts if they are unhappy with a hospital’s decision.
Connie adds: “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. We have health professionals and doctors with us. We have even met some doctors who initially opposed our decisions.
“We are appealing to other families to join us in our fight and contact us. We need them onside when we present the evidence for the review in October. We really 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 little child a chance of living. We’re nearly there.”
Charlie’s plight touched the heart of the nation. He was just five weeks old when doctors revealed he was profoundly deaf.
“I kept thinking ‘he won’t be able to hear me say I love you’ and that kept breaking my heart. What I’d give for him to just be deaf now,” says Connie.
At eight weeks – and below his birth weight of 8lb 3oz – Charlie had tests at West Middlesex Hospital. He was admitted days later and would never go home again.
He was transferred to London’s Great Ormond Street Hospital, where he was diagnosed with rare mitochondrial DNA depletion syndrome, which causes progressive muscle weakness and brain damage.
Connie says: “I found a potential treatment in the US. It offered up to a 56% chance of working. GOSH weren’t able to offer any treatment, so we thought why not?”
The family set up a GoFundMe page, eventually raising £1.3million. Messages came in from the Pope and Donald Trump, then US President. But as Charlie’s condition worsened, GOSH required any external treatment to be sanctioned by a judge.
Connie says: “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. We weren’t unfit parents.
“We were just a normal couple with a baby. Why did we need taking to the High Court?”
There were five court cases in all – at the High Court, the Court of Appeal, the Supreme Court and 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. Charlie died three days after the last hearing. His parents consented to switching off his life support after a full-body MRI scan showed he had just 10% muscle left.
Chris says: “It was the worst day of our life. Truly awful.”
The couple used funds to set up the Charlie Gard Foundation, aiding sufferers of rare genetic conditions.
Connie says: “It’s amazing. In the last week I have been speaking to three or four people who have needed our help. We work solely for the foundation, providing financial and emotional support for families affected by mitochondrial disease. The foundation is trying to do all it can to ensure that parents and clinicians have access to mediation at the earliest stage, so cases don’t end up escalating to court.”
On Friday, a court ruled that brain-damaged Archie Battersbee ’s life support should be switched off – against the wishes of the 12-year-old’s parents, who live in Southend, Essex.
Connie says: “It’s extremely upsetting to see another child and family have to go through such a high-profile court case.
“We empathise with Archie and his mum at what we know too well will be an extremely difficult time.”
To help the Charlie Gard Foundation go to thecharliegardfoundation.org
