Ellie56 I agree with what you have posted while feeling great sympathy for CY and CG and for everyone who was close to Charlie including the staff at GOSH who have been maligned. The facts of this family's bereavement are sadly not unusual. There are many progressive conditions with no cure and which will end lives, despite the best care we can provide.
Of course all of these bereavements are untimely and devastating for those affected- but that doesn't automatically mean that someone must have been at fault or someone must pay for their mistake or the that the system was somehow rigged.
I was worried seeing that Telegraph article linked to upthread that CY and CG will campaign 'to change' the medical and legal systems.
What does that 'change' mean? Those frameworks did the right things and they protected the right person (the child) in this case, while being equally open to other new evidence for a reasonable amount of time. I hope it worked the same way in all comparable cases.
CY and CG have built such a huge platform now to do good- there is so much they could do in Charlie's memory- imagine if they got behind highlighting more funding for mito research or providing peer support for other bereaved parents, or funding and volunteering for hospice or hospital charities, to name a few.
But the nonspecific reporting about the type of 'change' that CY and CG will be campaigning for, is concerning given the sheer volume of misreporting there has been in the media about Charlie's case. A lot of posters have mentioned how hard it is to find a balanced informed report about this case.