Charlie Gard’s grieving dad reveals what he’ll miss most on Christmas day

Charlie Gard’s dad has revealed that his heart will be broken on Christmas morning because he won’t see his son’s smiling face.

Chris Gard and Charlie’s mum Connie Yates still struggle with the death of their beloved son.

They lost little Charlie with the eyes of the world on them in 2017, reports MyLondon.

The parents, from Bedfont in Hounslow, fought to take Charlie to the USA for experimental treatment, after being told by doctors in London that nothing could be done to save him.

But eventually their legal battle faltered and Charlie died in a hospice, at just 11 months old, in the company of his parents.

Devastated dad Chris has opened up about Charlie’s legacy, trying to change the law to help other families and what it was like being in the glare of the media spotlight.

Since losing Charlie on July 28, 2017, he says there hasn’t been a single easy day for Chris and Connie.

But Chris admits Christmas can be particularly emotional.

He told My London: "Every day is hard, especially at this time of year.

"I remember when I was a kid I would be so excited for Christmas and the fact I will never see Charlie’s smiling face on Christmas morning breaks my heart.

"But all we can do is work on his legacy."

Chris was speaking out to raise awareness about the Charlie Gard Foundation Christmas Fayre, which takes place on Saturday December 15 in Bedfont.

The foundation was set up in June 2018 to work for a "brighter future" for other sick children and their families.

Chris says the difference Charlie made in his short life continues to motivate his parents.

He said: "The impact that little boy had on the world – you just couldn’t make it up.

"That’s inspired us and that keeps us going. We were reborn when Charlie was born."

One of the aims of the foundation established in Charlie’s name is to research ways to tackle the condition that ended his young life.

Infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS) is rare and not widely known about.

Chris said: "There’s not a lot of awareness about the disease – I certainly wasn’t aware of it before Charlie – so the fayre this weekend will be about raising money for research but also awareness.

"We hate this disease and despise it. It took Charlie from us. So we’re going to do all we can to eradicate that.

"One of the many things we want to support is research to hopefully find that elusive cure."

However the Charlie Gard Foundation has other aims too, beyond research to tackle the disease.

It is also working to support families going through ordeals similar to the one endured by Chris, Connie and Charlie.

Chris added: "We raised a lot of money for Charlie so we want that to go towards research but also to memory making for those children who are still here without much time left.

"We’ve also donated wheelchairs and hoists and things like that to help other families."

The reason Charlie Gard’s case made the headlines was because of the legal battle between Great Ormond Street Hospital and his parents.

Both fundamentally disagreed about what was best for Charlie.

The tussles in the courts made things harder for Chris and Connie.

Now they want to change the law to make sure other parents avoid the same ordeal.

Chris explained bringing about a so-called ‘Charlie’s Law’ remained one of the key aims of the foundation.

He said: "Charlie’s Law is still very much the focus.

"We want to make sure families don’t have to go through this again.

"We’ve been speaking to senior politicians to try to change things."

The process of trying to bring about change has involved Chris and Connie speaking to people who opposed them during the legal fight to save their son.

But Chris says such cooperation is necessary to make things better – for parents and doctors.

He added: "We’ve got together with a lot of people who disagreed with us. We’ve realised that to change things we’d have to speak to doctors, to ethicists.

"We want to get a law that is better for everybody."

The key thing Chris wants to see is compulsory mediation in complex medical cases like Charlie’s, to keep disagreements out of the stressful environment of the courts.

"Any case that avoids going to court means a lot less heartache for people," he added.

Charlie’s case went through the highest courts in the UK – which led to his family being at the centre of worldwide media scrutiny.

US President Donald Trump and even the Pope offered their opinions on the case.

But Charlie’s dad says all of that never really sunk in because of the relentless focus on his little boy.

Chris said: "We never really realised how big it was for the outside world.

"We were in a bubble – all we cared about was Charlie.

"But it has been tough at times.

"We knew when we went to the media in the first place that we needed the money for Charlie but we could divide opinion and upset a few people.

"That said, the majority of people I speak to say they think Charlie deserved a chance. No one thinks we were bad parents."

Support from the family’s west London community – where the Christmas fayre for the foundation will take place on December 15 – was a welcome tonic to all the attention.

Chris said: "The community have been fantastic.

"We both lost our faith in humanity a little bit during the battle to save Charlie.

"But the support we’ve had has been phenomenal."

Ultimately Chris and Connie fought for hope – hope that their son could survive, if they gave an alternative option a try.

And the dad remains determined to keep campaigning for more research and more sensible laws – in order to give that hope to other families.

Chris said: "You cannot deny how much power there is in hope.

"We felt hopeless at times but without hope what are we?

"If we can give other families some hope we’d have done Charlie proud."

The power of hope and love is certainly something worth remembering at Christmas.

If you want to support the Charlie Gard Foundation you can attend the event in Bedfont on December 15 or visit the charity’s website.

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