Five years on from his death, Charlie still plays a big role in his family - and his parents hope a law in his name can save others from their ordeal, as Louise Scott reports
On Scotland’s Northeast coast lies the Highland city of Inverness, more than 500 miles from the hustle and bustle of London. It’s where the parents of Charlie Gard have moved, hoping for a more peaceful life.
Five years have passed since Charlie’s death, but no time or distance has been able to erase the pain they feel every day. And the trauma of the court battle, is very much still with them.
Charlie’s mum Connie reflected on those months of trying to get her son to the US for experimental treatment: “We were looking at our little boy and he’s looking back at us and he’s squeezing our hand and he’s still there and we weren’t able to take him.
"We just couldn’t believe we didn’t have the parental rights to do so. I still can’t believe it. It’s nearly five years on and I just can’t understand as a parent that you lose those rights, and you can’t try and save your child.”
Charlie Gard was born on 4th August 2016 but soon diagnosed with mitochondrial DNA depletion syndrome, a rare genetic disease that caused progressive muscle weakness.
Charlie’s parents, Chris Gard and Connie Yates, were embroiled in a five-month legal battle with the hospital where their son was being treated, to gain permission to fly him to the US for experimental treatment.
But their appeal was rejected, and Charlie died on 30th July 2017 - days shy of his first birthday. Connie says: “All that wasted time really. He had a degenerative condition and by the end, when I think we would have won that court case, it was too late for him.”
Chris agrees, adding: “It’s obviously very frustrating for us. It was a three-month trial of treatment that we wanted, and it took five/six months to get to court.”
This is what they want to change. Currently going through the parliamentary system at Westminster is Charlie’s law.
The aim is to prevent more families having to endure lengthy court battles and instead ensure a decision is made within hospital grounds in a time sensitive manner.
There’s been a lot of work for the family to get to this point, Chris says: “We’ve worked very hard with doctors who openly opposed us during Charlie’s case, to try and find a way that works for both doctors and parents.
"One of the misconceptions of Charlie’s Law is that’s its allowing parents to do what they want, but that is not the case. It’s finding a middle ground that suits both the doctors and the families so that some resolution can be sorted before it gets to court.”
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But working with those who opposed them has not been easy, as Connie explains: “Initially it was very difficult, but for the end goal it’s all worth it.
"We sat down together and thought how can we improve this, because both parties agree that it’s not right the way it is. It’s incredibly stressful for parents obviously, and doctors should be in the hospitals doing their jobs as well.
"They don’t want to be in court just as much as the parents don’t want to be in court.”
Charlie’s law will undergo a review in October, and they are hopeful that the Law could be implemented early next year.
Chris says: “It’s massive for his legacy. Charlie was our world; our lives fell apart when we lost him.
"As his parents, we just try and do him proud. If we can get the law changed in his name and if Charlie can help prevent other parents from going through what we did – we couldn’t be more proud of him.”
The court experience was so traumatising for the family that they now avoid news reports of similar cases.
But Chris says they still support other parents fighting for their children: “Whenever I see on the news or social media even a picture of the Royal Courts of Justice I feel sick to the stomach.
"Whatever your views are, I sympathise with the families involved because me and Connie both know what it’s like to go to the court, have a judge sitting up the top and saying what’s going to happen with your child, whether they live or die. I wouldn’t wish that on my worst enemy.”
In the next month, to mark the fifth anniversary of Charlie’s death and to help raise funds for their foundation, Connie is going to cut her hair. It will be the first time she’s done so since losing her son.
While holding the end of her hair, Connie says: “I’m quite attached to it in a way, because I think well I had this hair when Charlie was here. But at the same time people lose their hair every day, and they’re brave about that so I’m going to be brave about this.”
As they look to the future, they share the happiness their new addition has brought to the family. Their son Oliver will turn two in August.
Watching Oliver run around their garden, Connie says: “It’s coming up five years since Charlie died at the end of the month, there’s something significant about it being half a decade.
It doesn’t get easier when you lose a child at all. But we do have a reason to smile now, our little Oliver. He just makes us truly smile again.” Chris added: “We just feel so lucky that we got another chance to have another child. Charlie passed away before his first birthday, Oliver’s obviously his own person, but it gives us an idea of what Charlie may have looked like when he’d grown up. And to watch Oliver take his first steps and say his first word, it’s just so beautiful to watch.”
And Oliver has no doubt as to who his brother is as dad Chris explains: “He’s too young to know that he’s not here anymore. But whenever he sees a photo he says ‘Charlie’ or ‘brother’ which is kind of beautiful, but heart-breaking at the same time.”
“We just wish he was here too,” Connie added.
Five years on from Charlie’s death he continues to play a crucial role in his family’s life, and they hope a new law in his name can bring relief for other parents in the future.