Furthermore, the hospital has refused to let them bring Charlie home after his life support turned off.
Connie Yates and Chris Gard have battled for a year to give their son the best chance of survival after he was born with mitochondrial depletion syndrome.
The couple raised an extraordinary amount of money to fund their trip to the USA for a pioneering treatment, however the courts prevented them from going. Arguing instead that it would be kinder to let the 10-month-old baby pass away.
After having their final hope for saving Charlie taken away, the parents wanted to take Charlie home so he could spend his final moments with his family away from the hospital where he had spent his entire life - but it was refused.
In a devastating post to Facebook, the family have revealed the depths of their pain at the decisions made surrounding their baby boy.
‘We are utterly heartbroken spending our last precious hours with our baby boy we’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies.’
‘We and most importantly Charlie have been massively let down throughout this whole process.'
Connie and Chris released a heartbreaking photo with little Charlie, as they stay with him during his final days:
‘Fourth of August 2016 was the best day of our life, the day that Charlie was born,’ says mum Connie.
‘The 30th of the sixth 2017 is going to be the worst day of our lives.’