The Jury Talks Back

7/24/2017

Parents of Charlie Gard: We Are About To Let Our Beautiful Little Charlie Go

Filed under: Uncategorized — Dana @ 4:52 pm

[guest post by Dana]

Heartbreaking decision announced today from the parents of Charlie Gard. They have decided to end their legal battle to be allowed to take their son to New York for treatment. In the words of Connie Yates, Charlie’s mother:

“The last 11 nearly 12 months have been the best, the worst and ultimately life changing months of our lives, but Charlie is Charlie and we wouldn’t change him for the world. All our efforts have been for him.

“We are about to do the hardest thing that we’ll ever have to do which is to let our beautiful little Charlie go.”

Time was of the essence in Charlie’s case, but it had run out far too soon:

The parents had been told by Professor Michio Hirano, a New York neurologist who has pioneered an experimental therapy for children with a similar condition to Charlie, that there had been a chance of helping their son. The case had become a cause celebre with support from the parents coming from Donald Trump and Pope Francis and a 500,000 signature petition calling on the hospital to let Charlie go abroad for treatment.

Miss Yates said it was “unfortunate” that Prof Hirano had not been given access to GOSH’s “raw data” in April – at the time of a previous High Court hearing – that showed “no actual evidence of irreversible brain damage”.

Two doctors had said further scans carried out last weekend had not shown “irreversible” brain damage, as the hospital had claimed earlier this year, but a new body MRI scan on Friday had revealed “irreversible” deterioration of his muscles that meant he was untreatable.

Miss Yates: “They [the doctors] both agreed that treatment should have been started sooner. There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – time. A whole lot of wasted time.

“Charlie had a real chance of getting better. It’s now unfortunately too late for him.”

She went on: “We are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought.”

You can watch Charlie’s dad, Chris Gard’s statement below. Of note: “This has never been about parents who know best. All we wanted to do was to take Charlie from one world-renowned hospital to another world-renowned hospital in the attempt to save his life…” And they weren’t allowed to do this for their little boy. They weren’t allowed to follow through on their decision to do what they – Charlie’s parents – believed was in his best interest. That they also weren’t allowed to take Charlie home to die speaks to a frightening level of State control exerted over the lives of private citizens. Private citizens, who loved their child beyond all measure, saw their primary function as parents stripped away by powerful entities.

Here is a statement from Great Ormond Hospital:

“We have always paid tribute to the extraordinary courage and strength of Connie Yates and Chris Gard and their devotion to their son. Today our hearts go out to them as they face the most difficult decision that any parent should ever have to make.”

Our staff share the parents’ sadness over Charlie, whom they have cared for with dedication during the months he has spent at Great Ormond Street Hospital. We were heartened to hear their appreciation of our staff’s care in their recent public statement.

We seek to care for and support every parent who brings their child to Great Ormond Street Hospital and it is a source of great regret in the very rare cases when an agreement cannot be reached about what is in the child’s best interests.

This has been an incredibly complex case, going to the heart of medical ethics and when, and if, experimental treatment is acceptable for children suffering from rare diseases. We would like to acknowledge all those who have contributed their expertise and advice.

Chris and Connie have communicated their desire to spend time with Charlie. We appeal for them to be given the space and privacy they need at this heart-breaking time.

This from the very hospital that told them, repeatedly, no. Just, no.

May God comfort Charlie’s parents during such an agonizing time, and may He bring them some measure of peace in their decision. As their hearts break a hundred times over, I will quietly take courage from them, knowing that they have chosen to pay the highest price a parent can in order to know the fullest love possible: “To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken.”

–Dana

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