Baby Charlie Gard dies in hospice, mother confirms

By Joni Hannigan/Twitter

Baby Charlie Gard has died.

"Our beautiful little boy has gone, we are so proud of you Charlie," said his mother in a statement released to the BBC by a family spokesman who confirmed his death earlier today.

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The 11-month-old was taken off life support in a hospice just over a day after the British High Court decided that artificial ventilation be withdrawn.

Their ruling follows a 5-month battle between Charlie’s parents, Chris Gard and Connie Yates, and the British court system, which had determined that doctors at Great Ormond Street Hospital in London were correct in rejecting care for the infant.

Charlie Gard was born with a rare genetic condition which prevented him from being able to see, hear, swallow, or cry, according the BBC. Mitrochondrial DNA depletion syndrome is usually deadly for infants and children.

According to a scathing statement Yates wrote to the court, Italian and American doctors were willing to treat Charlie – but the delay cost Charlie his life.

“Time that has been wasted,” his mother wrote. “It is time that has sadly gone against him.”

In a heart-wrenching commentary, she spoke of the support and offers given for treatment which might have assisted the ailing child, and the hope, love, and pride they had for the child.

“We were told back in November that all his organs would fail and it was likely that we only had days left with him but to this day aside from Charlie's need for ventilation not one organ has 'failed,’” she said.

We are struggling to find any comfort or peace with all this, but one thing that does give us the slightest bit of comfort, is that we truly believe that Charlie may have been too special for this cruel world.

We are now going to spend our last precious moments with our son Charlie, who unfortunately won't make his 1st birthday in just under 2 weeks' time, and we would ask that our privacy is respected at this very difficult time.

Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you.

Sweet dreams baby. Sleep tight our beautiful little boy.

Charlie Matthew William Gard

Our hero.

On Wednesday, their attorney said following the determination the child should be removed from life support, that Charlie’s parents still were not given permission to bring him home to die—or to spend time with him in a hospice.

Initial plans to bring the child home were met with hospital resistance, according to the New York Times when it was determined the ventilator would not fit through the family’s front door – and later the hospital determined its staff would move Charlie to a hospice where they would shortly thereafter remove his life support.

The BBC Friday also reported the family spokesperson said Charlie's parents had been denied their "final wish" to spend more time with their dying son.

Wesley J. Smith, a bioethicist who serves as a senior fellow at the Discovery Institute’s Center on Human Exceptionalism, in the National Review expressed his deepest sympathies to Charlie’s parents.

“May the support they received from millions of supporters bring some comfort in the midst of their grief,” he wrote.

Referencing the “erosion of parental rights,” and the discussion of what may be a patient’s preference to live rather than to die, Smith said that talk will follow – but for now there is the memory of “Little Charlie Gard” and his parents.

“He will be remembered for the intense love of his parents and the astonishing support they received from around the world in their vain attempt to care for the sick little boy and try to extend his life as they—not judges, not doctors, not bioethicists—thought best,” Smith wrote.

-- Joni B. Hannigan is an award-winning writer, editor, teacher, PR specialist, and the author of thousands of news and feature articles. She is also an accomplished photojournalist. In 2015 Joni won the Frank Burkhalter Award in Religious Newswriting at the Wilmer C. Fields Awards Competition. She is a U.S. Navy veteran. Follow her on Twitter and Facebook