They know they can never replace their beloved son. But Charlie Gard’s parents today reveal they are preparing for another battle as they hope to have another baby.
Chris Gard and Connie Yates lost tragic Charlie a week before his first birthday last July after a bitter legal fight with doctors that gripped the nation.
And now, nine months after saying goodbye to their little Charlie, the pair open up about their daily heartache – and their hope that they can one day give him a little brother or sister.
It comes as they campaign for Charlie’s Law, to help give parents more involvement in life-and-death decisions if their child is seriously ill.
In the second day of our exclusive interview, Connie, 32, says: “Becoming a mother was the most wonderful thing that’s ever happened to me.
“I adored having Charlie and couldn’t envisage a life without another child.”
However, the couple know another child would have a one-in-four chance of having the same condition as Charlie. But they believe their beloved boy would like them to give him a sibling.
“We know Charlie would want us to move on and have a brother or sister,” says Connie. “And if we do have another baby we will tell him or her about their beautiful brother Charlie. He will always be a big part of our family.
“It’s still very early days but we already know we are facing a hurdle and there could be big challenges for us.”
When Chris, 33, and Connie first met eight years ago, they had no idea that hidden within their DNA they both carried the same rogue gene.
While they are healthy, this resulted in Charlie being born with the extremely rare RRM2B mitochondrial depletion syndrome, which affects the muscles.
Connie says: “The gene is extremely rare. It’s probably a one-in-a-million chance that either of us carry this gene, let alone that both Chris and I have it.
“And even though we both carry this rare gene, we still only have a one-in-four chance of having a baby born with Charlie’s syndrome. Ironically we could have had three children together, all of whom are unaffected, and never realised we were even carriers.”
It raises questions for the couple and is something they will have to discuss with doctors when they are ready.
Yet, as with their battle to get Charlie pioneering treatment in the US, they plan to face it together.
“Connie and I always pull together,” says Chris. “Some couples might split up under so much strain but we will approach this as we’ve approached everything – together.”
Charlie seemed healthy at birth but, aged two months, fell ill and was put on life support at Great Ormond Street Hospital. Chris and Connie fought to be allowed to take Charlie to the US for pioneering treatment.
They lost their legal fight, and he died on July 28 last year, 12 minutes after being taken off life support.
It would be unimaginable to go through again. Yet friends and family have been impressed at how, despite so much grief, the couple from Bedfont, West London, have remained united and supportive of one another.
The pair agreed that after Charlie died in a hospice they should bring his body home in a chilled cuddle cot. Connie feels particularly sorry the family of little Alfie Evans, believed to have had a similar condition, who was never able to go home before his death on Saturday.
“Finally having Charlie home with us was very therapeutic,” says Connie.
Connie tells how at Charlie’s bedside she recorded her own version of the Sarah McLachlan song In The Arms Of an Angel, which was played to the congregation at Charlie’s private church funeral last August. She and Chris also gave speeches at the ceremony.
“I could hardly speak because I kept feeling the tears,” she says. “And when Chris stood up and said he was the most proud of me, I went to pieces.” After the service, where his tiny coffin was surrounded by flowers shaped into little soldiers and his favourite monkey toy, friends and family walked to a nearby park where each released a blue balloon.
Connie also gave them each a pack of forget-me-not seeds to plant. “Those flowers are now growing symbols that Charlie will never be forgotten,” she says.
She adds: “Last Christmas, Chris and I went to light a candle on Charlie’s grave. In the bag of candles I hid a present from Charlie to Chris – his fingerprint on a necklace. We put a Christmas tree on the grave.”
Now the couple have set up The Charlie Gard Foundation, due to launch next month. Connie says: “So many people donated towards Charlie’s fund. We’ll never forget their kindness and generosity. So after Charlie’s death it seemed apt to use the donations to set up the charity.”
She adds: “There’s hardly any treatments for mitochondrial disease and we felt more research was vitally needed.
“There is also very little support for parents like us who are given the devastating news that their chid has mito and there’s nothing doctors can do.
“Mito is very under-funded with regards to research, so we’ll largely be focusing on working with specialists from around the world to ensure we invest in the very best pioneering projects to find that elusive cure.”
They are also collaborating with other charities to become an information hub for families after a diagnosis.
Connie adds: “We’ve all seen again with Alfie’s story how heartbreaking it is for families. The Foundation hopes to support families through all stages.”
The couple are also focusing on Charlie’s Law, calling for parents to get independent mediation and information about their rights when in a dispute with a hospital over their child’s care.
Connie says: “I fully believe that if Charlie’s Law was in place we would have been able to take our own son to another hospital to try the treatment, which is why we need the law to change – for the next family.”
- For more information on Charlie’s Law see thecharliegardfoundation.org .
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