Charlie Gard wont reach his first birthday...parents give up the battle.

by Syl Mon Jul 24, 2017 7:13 pm

Charlies parents are at last giving up their sad and desperate battle to keep their baby alive.

https://www.theguardian.com/uk-news/2017/jul/24/charlie-gard-parents-end-legal-fight-over-critically-ill-baby

"Charlie Gard’s parents have ended their legal fight for their critically ill baby to be flown to the US for experimental treatment, saying it was too late for the process to work.
After a five-month court battle, they said at an emotional hearing on Monday that they were abandoning their fight for Charlie to receive the nucleoside bypass therapy (NBT) they hoped would bring about significant recovery. Their decision means that Charlie, who was born on 4 August last year with a rare genetic condition inherited from his parents, will shortly be removed from life support at Great Ormond Street hospital (Gosh) and will not live to see his first birthday.
After Grant Armstrong, acting for Charlie’s parents, shocked the packed courtroom in central London by saying that owing to to “extensive muscle atrophy” they believed he no longer had any prospect of enjoying a “meaningful life”, the baby’s mother, Connie Yates, read a statement.
As she tearfully paid tribute to the couple’s son from the witness stand and insisted that they had only done what any parent would do, friends, family, lawyers and members of the press also wept."

by Raggamuffin Mon Jul 24, 2017 7:24 pm

I'm very very sorry for them, and I admire the way they're fought for his life. I read though that even if he lived, he would be unable to do virtually anything, and he would be blind and deaf as well.

by Syl Mon Jul 24, 2017 7:34 pm

Raggamuffin wrote:I'm very very sorry for them, and I admire the way they're fought for his life. I read though that even if he lived, he would be unable to do virtually anything, and he would be blind and deaf as well.

Yes they did what millions of parents would do if they could, they fought to give their son a chance.

It's sad that it seems they could have been offered false hope that Charlie could be helped..now its time he was allowed to rest in peace, and their parents know they did everything in their power to help him.

by Raggamuffin Mon Jul 24, 2017 7:39 pm

Syl wrote:
Raggamuffin wrote:I'm very very sorry for them, and I admire the way they're fought for his life. I read though that even if he lived, he would be unable to do virtually anything, and he would be blind and deaf as well.

Yes they did what millions of parents would do if they could, they fought to give their son a chance.

It's sad that it seems they could have been offered false hope that Charlie could be helped..now its time he was allowed to rest in peace, and their parents know they did everything in their power to help him.

I don't think it's sad if they were offered false hope - or a hope which was too optimistic anyway. If they had given up earlier, they would always have wondered if they did the right thing.

by Syl Mon Jul 24, 2017 7:46 pm

Its sad if the false hope they were offered wasn't genuine though....and some doubt seems to be cast on the American Dr who claimed Charlie could be helped.

The hospital later made an unprecedented attack on US neurology professor Michio Hirano, who had led Charlie’s parents to believe he could be treated. In a statement it said Gosh had shared their hopes when Hirano said he had new evidence that Charlie might benefit from NBT.

But it added that they had learned with “surprise and disappointment” last week that he had neither looked at the child’s brain scans nor read the medical notes, other expert opinions or the judgement of the court. It added that Hirano “retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie”.

by Raggamuffin Mon Jul 24, 2017 7:49 pm

Syl wrote:Its sad if the false hope they were offered wasn't genuine though....and some doubt seems to be cast on the American Dr who claimed Charlie could be helped.

The hospital later made an unprecedented attack on US neurology professor Michio Hirano, who had led Charlie’s parents to believe he could be treated. In a statement it said Gosh had shared their hopes when Hirano said he had new evidence that Charlie might benefit from NBT.

But it added that they had learned with “surprise and disappointment” last week that he had neither looked at the child’s brain scans nor read the medical notes, other expert opinions or the judgement of the court. It added that Hirano “retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie”.

I still think that if they had given up earlier, with or without false hope, they would wonder for ever if anything could have been done.

by HoratioTarr Mon Jul 24, 2017 9:17 pm

I think once you accept the inevitable, then you gain some measure of peace.

by eddie Mon Jul 24, 2017 9:45 pm

Syl wrote:
Raggamuffin wrote:I'm very very sorry for them, and I admire the way they're fought for his life. I read though that even if he lived, he would be unable to do virtually anything, and he would be blind and deaf as well.

Yes they did what millions of parents would do if they could, they fought to give their son a chance.

It's sad that it seems they could have been offered false hope that Charlie could be helped..now its time he was allowed to rest in peace, and their parents know they did everything in their power to help him.

Syl as harsh as I am going to sound I have to be honest:

Knowing what his life would be like even with treatment, I would NOT have done what they did. I simply would not. Not for my son nor for me. What life is that for the child and what life would it have been for them?
What's the point?

Honestly, they've simply wasted time and effort when they could've just concentrated on spending more time with their son and sometimes yes, just with each other.

by Syl Mon Jul 24, 2017 11:34 pm

eddie wrote:
Syl wrote:

Yes they did what millions of parents would do if they could, they fought to give their son a chance.

It's sad that it seems they could have been offered false hope that Charlie could be helped..now its time he was allowed to rest in peace, and their parents know they did everything in their power to help him.

Syl as harsh as I am going to sound I have to be honest:

Knowing what his life would be like even with treatment, I would NOT have done what they did. I simply would not. Not for my son nor for me. What life is that for the child and what life would it have been for them?
What's the point?

Honestly, they've simply wasted time and effort when they could've just concentrated on spending more time with their son and sometimes yes, just with each other.

It's an honest opinion, and I believe I would think the same in that position.
But....I don't think anyone can truly know unless they have walked in that persons shoes.

by eddie Tue Jul 25, 2017 12:12 am

I think I do know how I would be.

by Syl Tue Jul 25, 2017 12:42 am

Well you know yourself better than anyone else.
It must be one of the hardest decisions any parent would ever have to make, whichever way they face it.

by magica Tue Jul 25, 2017 1:02 am

I admire these parents, they never gave up and tried everything to help their baby. I would've done the same, any parent would.

Now they have to let him fly, and their love will go with him.

Their utter heartbreak will then begin, so sad.

by nicko Tue Jul 25, 2017 6:34 am

I have to agree with Eddie, if the child had lived what sort of life would he have, and what life would the Parents have?

by Miffs2 Tue Jul 25, 2017 8:27 am

Feel very sorry for his parents and family but it is the right decision. They did all they could, time to let him go. So very sad.

by HoratioTarr Tue Jul 25, 2017 9:45 am

If they've genetically passed this one, then I'm presuming they won't have any more children.

by nicko Tue Jul 25, 2017 10:48 am

Don't bet on it !

by Syl Tue Jul 25, 2017 11:47 am

They didn't know they had this gene before they had Charlie, having seen the way they have suffered since he was born I doubt they would take the chance to put another child, and themselves through this again.

My heart breaks for this family.....parents who know they carry faulty genes that they then pass on the their offspring...and have several, are cruel and selfish imo.

by magica Tue Jul 25, 2017 4:11 pm

HoratioTarr wrote:If they've genetically passed this one, then I'm presuming they won't have any more children.

They will go for genetic counselling where they will be tested to see if it does pass on.

My thoughs are with those parents, they tried everything, now it's time to let him go. Heart breaking.

by eddie Tue Jul 25, 2017 4:23 pm

HoratioTarr wrote:If they've genetically passed this one, then I'm presuming they won't have any more children.

There was a woman on the radio who had three children and passed this debases on.
Left me feeling a bit confused as to why someone would do that.

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