URGENT Way in on allowing Charlie Gard medicine that may improve condition
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His parents are only asking for two months of the treatment which has no side-effects. This would be enough to find out whether or not it would be effective. He is stable and not in any pain. Why should they have their parental rights taken away from them by the courts and decisions about their child's life made by strangers.
The doctors said that it would be too stressful for Charlie to live for two months in order to have the treatment. It's now been more than four months, in this time he could have had the medicine. He's only got until tomorrow.
Charlie’s parents have worked tirelessly since his diagnosis to increase their knowledge about his illness (a type of mitochondrial depletion syndrome, known as RRM2B), and Mr Justice Francis himself described them as ‘experts’. During their search they found a U.S. doctor trialling a pioneering treatment called nucleoside therapy. In December 2016, this treatment was suggested to Great Ormond Street Hospital, but they were reluctant to try the treatment in the UK as it was untested and considered unlikely to be of any benefit to a child with Charlie’s ‘severe’ problems.
If we don't test these new treatments how can we possibly find out how effective they are? I’m not a medical professional but it makes sense that these things must be trialled somewhere and, unfortunately, with such a rare condition, opportunities won't present themselves too often. With regards to Charlie’s ‘severe problems’, his parents are with him daily, and they disagree that his condition is untreatable. Yes, he is severely ill and may not recover from this, but it’s his human right to be given the chance and opportunity to live. If Charlie lived in the USA, he would have already received this treatment without question. His parents are determined to do everything possible to give him a chance at life, and have raised over £1.2 million to transfer Charlie overseas and get him the treatment he needs. Although this treatment has not been trialled on anyone with RRM2B it has been successfully trialled on people with a similar type of mitochondrial condition, TK2, with which the only reported side-effect is diarrhoea.
Over the past few weeks, I have read articles written by the parents of children who would’ve certainly died without this treatment, but have survived and are able to do things that doctors never dreamed they would. These children, if they lived here in the UK, would have had their life support removed, thereby sentencing them to death. However, because they live in the USA they are now alive and thriving. Surely this can’t be right; are not all babies lives precious? Charlie’s mum talks about one little boy who has TK2 and was the first to try nucleoside therapy in America: ‘He is now aged six. Although still ventilated, he is well enough to enjoy trips to the movies and zoo. He grows stronger every day. His parents say they took the same slim chance and have absolutely no regrets. Evidently, even if the chance is very small, it MUST be a chance worth taking.’
In an interview with the Daily Mail, Charlie’s mum said: ‘When I think about willingly turning off Charlie’s life support, with him dying in our arms, I cry uncontrollably. It’s so hard because he is so stable — he is growing before our eyes. Only this week I had to order more baby grows in bigger sizes as he is thriving. Every day he looks more and more like Chris. He has chubby squeezable little legs, his hair needs to be combed more . . . Letting Charlie go is something we would have faced up to, would have prepared for and accepted, if we felt we’d exhausted all chances of treatment . . . It is knowing there is something that could make him better, which we are simply not allowed to give him, which is so devastating. As loving parents who are putting our child first, I cannot put into words how heart breaking it is to have our parental rights stripped away from us and to have decisions made about our child by strangers.’
Charlie’s parents can see him developing, contradicting the opinions of those who have fought to turn off his ventilation. Charlie’s parents talk of his wake/sleep cycles in which they can see him slightly opening his eyes and then closing them as he relaxes and responds to human contact. Prior to the court hearing, in her desperation, Charlie’s mum posted online and said that he’s not as bad as they say, that she and Charlie’s dad are proud of him moving his hands or feet, opening his eyes, moving his mouth despite only having 1-2% muscle strength. She said of herself: ‘You break down in court hearing: “No purposeful movements”, “He can't breathe because his brain doesn't work”, “He's blind”, “He never wakes up”, “He's in pain”; none of that is true! We are the ones who spend every waking hour with Charlie . . . well over 3000 hours since he arrived in hospital – you know your child, you know when they are happy or sad, we know best or we wouldn’t still be fighting! You swear on the bible in court and know that you’re telling the truth: “He's not blind”, “He does respond”, “He's not in pain”, “He doesn't have a good quality of life BUT he needs this chance, the chance to improve”, “He's not suffering or I wouldn't be standing here now”, “His MRI is fine”, “He should improve”, “Please trust us as parents; we won't let him suffer”, “He needs this chance!”.’
I feel that we, as a nation, are letting this family down and desperately need to support them. The medical professionals, in whom they have put their trust, have rejected their choices and it was reported that one doctor described them as ‘a spanner in the works’ because they were determined to do their own research to save their son. It's appalling in this day and age in the UK that these professionals have taken parents to court in order to end Charlie’s life when not all options have been exhausted. In addition to this, the family have received no legal aid and have been forced to attend a court hearing when they wanted to be at their baby’s bedside. This is why I am appealing to you.
Charlie’s condition is so rare he is believed to be just the 16th sufferer in the world. With this in mind, neither Great Ormond Street Hospital doctors, nor Mr Justice Francis, are informed enough to decide whether the treatment offered in America would improve Charlie’s condition or not. Charlie deserves the chance to live, and also the chance to support the development of this pioneering neurological treatment. We want to give baby Charlie Gard the opportunity to live, please will you help us?
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