Just a few days ago, Charlie Gard passed away in a hospice with his parents, Chris Gard and Connie Yates by his side. His story is set to change the way many think about medicine as well as help pave the way to new technologies in this field in the hope to find a cure for those living with conditions like Charlie’s.
In 3 days time, Charlie and his family would have been celebrating his first birthday, but instead they mourn for the baby with mitochondrial DNA depletion syndrome. At a few days old, he seemed like any other new born – the thought of their son dying in less than a year was a thought that wouldn’t have crossed the parents’ minds.
September 2016 – at just one month old, Charlie was taken ill at Great Ormond Street Hospital and diagnosed with the rare genetic condition that caused muscle weakness and brain damage. He was never to return to his family home.
November – although this was 8 months before his death day, the doctors at the infamous children’s hospital told the parents their son had a matter of ‘days to live’ stating that his ‘organs would fail’ in the near future. It was at this time that mother Connie Yates discovered Michio Hirano – a professor of neuroscience at Columbia University (who was in the stages of developing therapy for children suffering from similar mitochondrial diseases).
January 2017 – Charlie suffered seizures lasting 17 days, which left irreversible brain damage.
3rd March – the first court visit for the family in which Great Ormond Street bosses asked Mr Justice Francis to declare that life support treatment should be stopped after hearing that Charlie could ‘only breathe through a ventilator’ and was ‘fed through a tube’.
11th April – Mr Francis agreed with the doctors, saying that he could ‘die with dignity’. He stated that it would be in Charlie’s best interests to be moved to a palliative care regime.
3rd May – 8th June – the case was taken through the Court of Appeal and the UK Supreme court. After losing on both opportunities, the parents appealed to the European Court of Human Rights, once again, losing their bid to save Charlie Gard.
27th June – a spokeswoman for the hospital said the European judges refusing to intervene in the case any further marked ‘the end’ of ‘a difficult process’. She went on to say that there would be ‘no rush’ to turn off the support and that there must be ‘careful planning and discussion’, however the parents were not willing to give up just yet.
2nd July – Ms Yates and Mr Gard received a message from Pope Francis sending his greatest condolences, as he also believed the machine should not be turned off, until he dies of natural causes – we should not give up on him. This support was shown after stating a paediatric hospital in Rome (Bambino Gesù) would offer the care he required.
3rd July – just one day after the pope’s declaration, President Trump also sent a message to Charlie’s parents, saying the US would help with the case. A group of American pro-life campaigners travelled to the UK with £1.3 million donations to help pay for the treatment, £100k more than the targeted amount on a funding page set up by Connie.
10th July – after being rejected by the High Court when presenting evidence showing Charlie’s life could be prolonged, Professor Hirano said his muscles had deteriorated to an extent that meant there was simply no hope, followed by the parents accusing the hospital of delaying processes that could have lead to Charlie receiving the treatment he needed sooner.
24th July – just over a week ago, the cases was ended. The barrister said: ‘the parents’ worst fears have been confirmed, it is now too late to treat Charlie’. It was then when they made a plea to take their beloved son home to die, however it was decided he was to pass away in a hospice – Ms Yates and Mr Gard recalled ‘they were denied their final wish’
28th July – the loving parents of Charlie Gard announced he had died hours after his life support was removed. His lungs didn’t have the muscle required to expand and contract, after the tape was removed.
‘Charlie has had a greater impact and touched more people in this world in his 11 months than many people do in a lifetime. We could not have more love and pride for our beautiful boy’ – Connie Yates, mother
With the funeral taking place very shortly, it will be the final goodbye for Charlie’s family, however it is certain that he, and his case, will never be forgotten. We see the rise of new cases, the media claiming them the ‘new Charlie Gard’, but nothing could replace the determination from Connie Yates and Chris Gard in this instance.
Charlie, your little feet really did make the biggest footprints, fly high and remember to love back the thousands of people whose hearts you melted along your 11 month journey.