My Plea:
No one should ever have to bury their child. It’s incomprehensible. It’s one of life’s cruellest and most indiscriminate acts, but it happens. Regardless of the situation, the loss of a child is the single most devastating event to happen in the lives of many families, parents, grandparents, siblings, aunties and uncles. The pain is immeasurable, and time isn’t a healer. We learn to adapt and live with the loss, but a little piece of us passes to Heaven with our angels and forever leaves an empty space in our hearts. We learn to live with the hurt, but we never forget.
On the 4th August 2016 the hearts of Connie Yates and Chris Gard were filled to bursting as their beautiful first-born son came into this world. Charlie completed their family and was everything they’d hoped for and more. Overjoyed and brimming with emotions, Chris and Connie took Charlie home with all the excitement and elation felt by all first-time parents. There were sleepless nights, many changes of clothes, the regular check-ups by the midwife, and the obligatory family visits that came with the arrival of your first child. It was a most magical time, and all first-time parents can relate to this heart-warming and distinctively recognisable beauty that is parenthood.
But, sadly, these happy memories and visions of loveliness were overshadowed by the devastating news that Charlie was poorly, and not only was he poorly, but he’d been given just weeks to live. Charlie had been diagnosed with a very rare form of mitochondrial disease called RRM2B, so rare that only 16 cases had been documented worldwide. It’s impossible to imagine what Connie and Chris were going through at this time, but as they sat by Charlie’s bedside their parental instincts and love overrode every other instinct and gave them the strength to fight for Charlie, and give him the best possible chance at life.
After days trawling through the internet, looking for medical professionals and institutions that could help, Connie and Chris found an America mitochondrial expert and neurologist who was trialling a therapy that could potentially help Charlie. After discussions with Charlie’s clinicians, and after a care plan and trial was drawn up, a three-month trial at a cost of £3000 was on the cards. This was amazing news and slowly the prognosis for Charlie began to change. There was hope at last! However, before the treatment was signed off, the hospital decided they no longer wanted to trial this in the UK and if Charlie was to receive the treatment it would have to be in the USA, costing a total of £1.3 million, and it would have to be raised in two months. How can anyone even begin to imagine raising such an amount? But Connie and Chris refused to give up. This was for Charlie, for his treatment, and they would move Heaven and Earth to ensure he received his chance at life.
The two-month deadline loomed closer but due to the unwavering efforts and determination to succeed, Connie and Chris’s fundraising campaign smashed records with GoFundMe and thanks to over 84,000 people donating, they hit the target with a day to go. I can’t explain how truly amazing this feeling must have been. They’d experienced highs and lows throughout the last several months but now they could go to America and Charlie could receive the potentially life-saving treatment they’d funded for. However, Connie and Chris were hit with yet another devastating blow. The hospital had now decided that Charlie couldn’t receive the treatment and it was now in his best interests to pass. After the highs of achieving the impossible, they were now having to deal with yet more life-shattering news.
What followed was a most distressing and protracted legal case that became widely followed and supported worldwide, capturing the hearts of millions including the Pope and the President of the United States, both reaching out to Charlie in the hope they could help him receive his treatment. But behind all the hype and media attention were just a simple, honest couple trying to save their little boy. The stress and strain they endured simply exorcising their parental rights must have been immense, and I cannot begin to imagine how one copes with such stress whilst also dealing with a child in intensive care.
After various court hearings and appeals Charlie’s time sadly ran out, and on July 28th 2017 – just a week before his first birthday – Charlie grew his angel wings. I cannot put into words the heartbreak and loss they endured, and just wish they’d never had to experience such pain, and hope they take some comfort in knowing that Charlie was so unbelievably proud of them both and they truly did everything they could to give him the best possible chance at life.
Despite going through such an ordeal, the strength and courage shown by Connie and Chris has been inspirational. Out of the darkest of times they shine a light for others. What they have dealt with privately has been a sheer battle, but rising from this devastating ordeal is nothing but love and determination. Despite grieving for Charlie, in the months that followed his passing, they began to create the Charlie Gard Foundation in memory of their beautiful son. It was evident in Charlie’s case that not enough research into mitochondrial diseases was being done, so they have pledged to fund some of the most pioneering and innovative research projects to help find viable treatments for mito patients.
Tirelessly, and selflessly, Connie and Chris have attended meetings, conducted interviews, spoken to professionals, travelled to hospitals both in and out of the UK, and have set the wheels in motion for some incredible medical changes to begin in the mito community, and have done so whilst also battling with their own personal grief.
Research is one branch of the Charlie Gard Foundation, the other branch being set up to help and support mito families and individuals. Again, both Connie and Chris met with various charities, spoke with different professionals, and created bonds and collaborations with many organisations to ensure they could provide a variation of services to better help the mito community. This was tough for Connie and Chris as many applications for assistance have brought back memories of Charlie and their journey, but again they brush their own personal grief aside and bend over backwards to ensure they help as many people who contact the foundation as possible. Whether someone requires home improvements, treatment, bereavement services, memory making gifts or just advice and support about their journey, Connie and Chris are there for everyone, and this selfless quality they possess so soon after losing their son is quite amazing.
Alongside the foundation, where they are helping and supporting the mito community, Connie and Chris have also been creating Charlie’s Law. This is something that has been incredibly difficult and raw for them as many meetings have involved digging deep into Charlie’s journey, and I can assure people that this hasn’t been easy. Discussing and re-discussing what happened to Charlie to find out where the fundamental areas in our current judicial and medical systems need addressing, was probably the most difficult of all. However, the huge support received from ethicists, politicians, doctors, nurses, judges, consultants and many other parliamentary figures has been the boost they needed to show that what they are doing is for the benefit of everyone.
Within two years Connie and Chris have lost so much, but despite losing the most precious gift of all they have soldiered on in the hope of creating a brighter mito future for children like Charlie, and help create a fairer and more open relationship with doctors, patients and families that will certainly benefit each and every one of us who are ever in the unfortunate position to have a loved one in hospital. Their love and determination touched the hearts of many around the world, inspiring some people to completely change the way they live, me included. They brought mitochondrial diseases to the forefront of medicine, with new trials and projects for Charlie’s original treatment now in the pipeline, and more awareness and focus has been awarded to more viable treatments for mito, something that may have taken years had it not been for Charlie, Connie and Chris.
They have created awareness around parental rights and the relationship between hospitals and patients, but rather than taking a negative approach to their situation, they have opened doors for discussion and created a pathway for professionals to look at ways in which things could be better. They have openly shared their story about losing Charlie, breaking down barriers with regards to discussing baby loss, and have taken their grief and truly horrific experiences and still managed to shine brightly through the darkest of times. It takes courage for anyone to achieve what they have achieved, but to do so whilst also grieving for their son is truly inspirational. Connie and Chris deserve to be recognised for what they have accomplished, and continue to strive for, and this award would be a most perfect way to honour them and their epic work.
Definitely deserves this award
By far the most inspirational parents in the world xxx
Couldn’t think of anyone more deserving!
#allbecauseofCharlie
#always_in_my_heart
They definitely deserve this award. #CharlieGard
Connie & Chris have created such awareness of Mitochondrial diseases, They have taught us all so much and the amazing work with thecharliegardfoundation.org has helped many families
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Connie has been amazing support to me through my own court process and losing my daughter. It must of been extremely hard for Connie to do this when it would of brought back such awful memories for her. But Connie is an inspiration. Chris too. They never ever gave up on Charlie. They made the world see what truly happens and how devoted parents are to their children. They made parents heard for the very first time in history. They fight for parents rights. Connie is MY inspiration xx
Very deserving, Two fantastic parents, human beings. ❤️
Chris and Connie so deserve this award. Amazing couple ???
Definitely deserves the award.
They definitely derseve this award
Very deserving! Two fantastic parents/Human Beings! Amazing! ❤️?
Connie and Chris so deserve this award for the support they give to other families after the awful ordeal they went through on there own battle with Charlie.
Connie and Chris both said they will help others and they stuck by there own words incredible couple X
truely amazing paretnts x
There can be no two people who deserve this award more so than connie and chris x
they definatly deserve this
They deserve this Award ?
Very deserving of this award. In the midst of their own tragedy, Connie and Chris have selflessly set up this foundation to help other parents.
Definitely deserve this award two parents with so much courage and so much fight and also to stand up to for other parents rights for their children
Charlie should never have gone through this battle and nor should his parents.
They have done socmuch to support other families,I’ve been at funerals where connie was there supporting.#charlieslaw #justiceformelody
Connie and Chris are the most inspirational people and they 100% deserve this award. They lost their little boy in the most upsetting battle but still they fight to help others.
Hope Connie and Chris get this award it’s truly deserved
Connie & chris so deserve this award.a lot of families hopefully will be spared some of the heartache they endured trying to fight for charlie.
They are both truly amazing. To turn the negativity into a positive to help others in so many ways, they deserve a little gratitude and recognition for their dedication. They’ve done so much to make their son Charlie proud. With the foundation now set up and Charlie’s law, which has now gone before Parliament for consideration. I hope to see this raise awareness and help both families and professionals come together.
My heart goes out to both having followed your story. From one Angel family to ankthet6 massive hugs. Shared your vote profile xx
Sono un esempio per tutti noi?
I honestly couldn’t think of a more deserving couple. What they went through, and how they dealt with it, took tremendous courage and respect and they need to be recognised for their amazing efforts.
What they do for other people behind the scenes is truly extraordinary, and to go through the pain and heartache of child loss and still think of others is a true testament to their selfless characters.
They are an inspiration to us all xxx
So deserving of this award.
Connie and Chris deserve this award, for their hard work and commitment even through the heartbreak that they have been through themselves.
Amazing parents who have never given up. You are an inspiration to us all! Good luck xx
Connie, Chris and Charlie…..touched the heart of the world ???
#bestparents
#allbecauseofcharlie
Connie, you have become an amazing friend and you help me so much with the children who are suffering from Mitochondrial DNA and you never complain – regardless of the time. You are always there to give me the advice, steer me in the right direction. You do amazing work behind the scenes and you are both amazing
These two amazing people deserve this award for the care and help to all them touched by MITO nobody deserves it more ???
Such a special little boy like Charlie had to have extra special parents. Connie and Chris are so courageous. To have lost their most precious son yet think of helping others shows true compassion and humanity. They deserve this award so very much.
Most inspirational parents who have continued through their own grief to help other parents. This award was made for them. #allbecauseofcharlie
#mitomatters
They definitely should receive the support they fought so hard for you baby
connie & chris definitely deserve this. such an inspirational couple.
connie, chris & charlie brought the world together.
#allbecauseofcharlie?
#mitomatters
Connie & Chris deserve this award ???
#mitomatters
#thecteam
#allbecauseofcharlie
Charlie’s Gard parents deserve recognition with an official award, of course!!!!
Connie and Chris are special parents???
Constance and Chris should definitely win this award……
They loved Charlie so much and found very hard to save him
I couldn’t think of a more deserving couple you are both so stong xx
Amazing people helping out others to save them the same heartache worthy winners all out love c-team
No one could of fought as hard as your parents did Charlie and you know that if love could of saved you , you would still be here…. inspirational parents #alwaysinourhearts #Charliegard
You deserve this and so much more !!!
The strongest and most inspirational parents .
#AllBecauseOfCharlie xxxx
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These parents fought so hard for their son and other children at a heartbreaking time. All parents should have the right to make decisions about their child.
Great work Connie & Chris so hope you win this award for your work. Xxx
Just reading this makes me cry all over again.
I can think of not one person who desurves this award more than connie. Its not just all they have been through, its not just what they fight for. Its also the way it is done. With dignity, with pride and with most of all love for 1st and formost Charlie but all the familys and children who are fighting this desease
What a lot of people don’t know is that chris worked in SEN some years ago and worked tirelessly for parents of children with SEN. He was such a credit to our team and we still miss him. I can think of no two people who deserve this award as much as chris and connie. They are true fighters and fought such a battle for their gorgeous baby boy. Good luck guys. You’ll always be my heroes as will little charlie xxx
Voting for Chris and Connie
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Connie and chris are an amazing and inspirational couple i followed their journey and battle when little charlie was alive! It os not fair that the hospital blocked their path to the usa hospital and its mitochondrial specialists that would have saved their little warrior!
My vote goes to Chris and Connie the most inspirational parents I know ?
Connie and Chris definitely deserve this award. After losing there baby, they still manage to help others.