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Charlie Gard: Parents could not say goodbye properly

Critically ill 11-month-old baby Charlie Gard has died. Picture: Family of Charlie Gard via AP

Critically ill 11-month-old baby Charlie Gard has died. Picture: Family of Charlie Gard via AP

Published Jul 30, 2017

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London - The grieving parents of Charlie Gard were said to be "distraught" on Saturday night at the speed with which his life finally ended.

Connie Yates and Chris Gard desperately hoped for a few more days to say goodbye to their son before switching off his life-support machine, The Mail on Sunday understands.

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But a friend of the family on Saturnight said they felt unable to say a "proper goodbye" because the hospice Charlie was transferred to had been unable to supply the equipment and team of medics Great Ormond Street Hospital (GOSH) insisted was necessary to prolong his life.

In a race against time to assemble the equipment and staff, Connie issued an emotional plea for experts to come forward on Facebook, writing: "PLEASE HELP US!! We need some peaceful time with our baby boy."

However, the couple fell agonisingly short of meeting GOSH’s demands – and the hospice was forced to ask them to end Charlie’s life on Friday.

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Charlie died just a week short of his first birthday from a rare condition which had gradually robbed him of the ability to see, hear, breathe or move.

Neither the family nor their spokesperson were commenting yesterday as Charlie’s parents asked for space to grieve.

But it’s believed that Connie and Chris considered GOSH’s stringent requirements to prolong Charlie’s life to have been "unnecessarily demanding".

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Their final wish for Charlie was that he should be allowed back to their home in Bedfont, West London, for his final hours. But this was denied, and experts said there was "simply no way" Charlie could spend time outside intensive care, despite nurses offering to work 12-hour shifts on their days off to make it possible.

As a compromise, he was transferred to a hospice where High Court judge Mr Justice Francis ruled doctors could stop providing treatment shortly after his arrival.

The parents of critically ill baby Charlie Gard, Connie Yates and Chris Gard. File picture:Matt Dunham/AP

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The claims are the latest front in an emotional and bitter battle between Charlie’s parents and the leading children’s hospital, which has treated Charlie since October 2016.

Charlie’s death marked the end of months of legal wrangling and public campaigning as Chris and Connie fought to transfer their son for experimental treatment in the US.

Doctors at Great Ormond Street had long argued that Charlie had suffered irreversible brain damage as a result of seizures linked to his condition, mitochondrial deletion syndrome, which causes progressive muscle weakness and brain damage and has only been diagnosed in 16 children across the world.

But the couple wanted to try a pioneering therapy being developed by Harvard-educated neurologist Dr Michio Hirano, a professor at Columbia University in New York. The treatment, nucleoside bypass therapy, had caused improvements in some patients. But none was as ill as Charlie, and GOSH opposed his move to the US, saying it was unlikely to help him.

The hospital’s position prompted a lengthy court case and inspired a worldwide campaign to save Charlie and death threats against medical staff.

But it ended after an MRI scan this month made for "very sad reading", and experts agreed there was no way to help the little boy.

Mail On Sunday

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