I know this is generally not allowed but plz help

[lee_fr200]

Nothing to do with me but this little man only has till Monday to raise the money and he's only a little bit short, I know there's a lot of wealth on here and since having kids myself I get quite emotional! He's already raised a million quid but needs a little bit more! I personally don't have that kind of money but I've donated £100, if you can't help at least copy the link and put it on your facebook to share it

Mods please leave this here it's a babies life forget the rules just till Monday which is the deadline

https://www.gofundme.com/please-help-to-save-charl...

[anonymous-user]

Poor, poor kid.
Horrible that they are being taken to court too..

[Chuck328]

Donated.

Hope the courts take this into account. Good luck wee man,

Edited to say, I see one Tamara Ecclestone threw 10 grand into this.

Edited by Chuck328 on Sunday 2nd April 00:46

[lee_fr200]

I know I read it and literally cried especially when I saw how much he's raised and nearly at his target! Bless him I put it on here as I know the money needed is literally pocket change to some on here and it's for a good cause

[lee_fr200]

Come on guys share this around as much as you can literally 24hrs left

[m3jappa]

just donated, as a parent with a child which picked up 2 totally random not good genes i feel for them. luckily for us it appears our daughter will be ok, i hope they get the treatment they need.

[Markbarry1977]

Donated and shared.

[jako1]

Donated.

Don't use Facebook so let me know what happens please

[hairykrishna]

Which doctor/hospital in the US is it offering the treatment? Is the 1.2 million quid payment to transport him over there or is it treatment fees of some kind?

I know it's horrible but there must be a reason that the UK consultants at Great Ormond street think that it's not in his best interests to go for this treatment.

[JeS10]

hairykrishna said:

Which doctor/hospital in the US is it offering the treatment? Is the 1.2 million quid payment to transport him over there or is it treatment fees of some kind?

I know it's horrible but there must be a reason that the UK consultants at Great Ormond street think that it's not in his best interests to go for this treatment.

Likely to do with complicated NHS ethics issues. My wife deals with moral issues in primary care, so deals with NHS ethics boards in her 'day job'. A treatment like this would likely be very challenging to put through - it would take months/years. Not to mention, doctors can't necessarily just offer a treatment just because it's available.

[lee_fr200]

He's pretty much hit the target now he's only a couple of grand off so hopefully the little dude can get sorted!

The NHS aren't the best I'm afraid I know someone who's child stopped breathing and he's had about 6 open heart surgeries and he's only just turned 1 he needs round the clock medical care and they were going to turn all his systems off but they fought and kept them on and while he still needs constant care he's getting a little stronger every day and he's in a much better position than he was a year ago although he does end up been in hospital quite a lot due to infection, look up finns story on facebook or I'm sure if you google it, they only live not far from me and it's completely heart wrenching

[Gargamel]

Well they made the target, wish them the best in the high court.

[m3jappa]

bloody hell its gone up nearly a hundred grand since about 2 hrs ago. fair play and i hope he gets sorted.

[TooLateForAName]

JeS10 said:

hairykrishna said:

Which doctor/hospital in the US is it offering the treatment? Is the 1.2 million quid payment to transport him over there or is it treatment fees of some kind?

I know it's horrible but there must be a reason that the UK consultants at Great Ormond street think that it's not in his best interests to go for this treatment.

Likely to do with complicated NHS ethics issues. My wife deals with moral issues in primary care, so deals with NHS ethics boards in her 'day job'. A treatment like this would likely be very challenging to put through - it would take months/years. Not to mention, doctors can't necessarily just offer a treatment just because it's available.

I suppose that the doctors dont believe that the treatment offered is likely to make a substantial difference to the child. The donations page doesnt give any info about the proposed treatment and we do know that there are a great many dubious treatments offered around the world.

I'd also guess that the NHS will not pay for unproven and expensive treatment to benefit a single child when £1.2m would provide a lot of other treatments which would be known to save lives.

[llewop]

TooLateForAName said:

JeS10 said:

hairykrishna said:

Which doctor/hospital in the US is it offering the treatment? Is the 1.2 million quid payment to transport him over there or is it treatment fees of some kind?

I know it's horrible but there must be a reason that the UK consultants at Great Ormond street think that it's not in his best interests to go for this treatment.

Likely to do with complicated NHS ethics issues. My wife deals with moral issues in primary care, so deals with NHS ethics boards in her 'day job'. A treatment like this would likely be very challenging to put through - it would take months/years. Not to mention, doctors can't necessarily just offer a treatment just because it's available.

I suppose that the doctors dont believe that the treatment offered is likely to make a substantial difference to the child. The donations page doesnt give any info about the proposed treatment and we do know that there are a great many dubious treatments offered around the world.

I'd also guess that the NHS will not pay for unproven and expensive treatment to benefit a single child when £1.2m would provide a lot of other treatments which would be known to save lives.

The population with this; 16 total has been mentioned; is so small, it isn't, unfortunately, surprising that a treatment hasn't yet been developed, tested and therefore able to be considered by GOSH. It would appear to be an exceedingly rare rare-disease (rare apparently = affects less than 5 in 10,000). I've actually got a rare disease (I think the figure in UK for late onset form is about 150 diagnosed) - the infant form of mine had a similar prognosis to this case (prior to treatment becoming available) and I think it is incredibly level headed of the parents to say that if the funds raised can't be used for his treatment, then they'll be used to support those with the condition. I hope they are successful, not just for their sake but for those that may follow and can continue to keep pushing back the boundaries of treatment.

[V8LM]

llewop said:

TooLateForAName said:

JeS10 said:

hairykrishna said:

Which doctor/hospital in the US is it offering the treatment? Is the 1.2 million quid payment to transport him over there or is it treatment fees of some kind?

I know it's horrible but there must be a reason that the UK consultants at Great Ormond street think that it's not in his best interests to go for this treatment.

Likely to do with complicated NHS ethics issues. My wife deals with moral issues in primary care, so deals with NHS ethics boards in her 'day job'. A treatment like this would likely be very challenging to put through - it would take months/years. Not to mention, doctors can't necessarily just offer a treatment just because it's available.

I suppose that the doctors dont believe that the treatment offered is likely to make a substantial difference to the child. The donations page doesnt give any info about the proposed treatment and we do know that there are a great many dubious treatments offered around the world.

I'd also guess that the NHS will not pay for unproven and expensive treatment to benefit a single child when £1.2m would provide a lot of other treatments which would be known to save lives.

The population with this; 16 total has been mentioned; is so small, it isn't, unfortunately, surprising that a treatment hasn't yet been developed, tested and therefore able to be considered by GOSH. It would appear to be an exceedingly rare rare-disease (rare apparently = affects less than 5 in 10,000). I've actually got a rare disease (I think the figure in UK for late onset form is about 150 diagnosed) - the infant form of mine had a similar prognosis to this case (prior to treatment becoming available) and I think it is incredibly level headed of the parents to say that if the funds raised can't be used for his treatment, then they'll be used to support those with the condition. I hope they are successful, not just for their sake but for those that may follow and can continue to keep pushing back the boundaries of treatment.

I believe the 'treatment' will be an IND (Investigational New Drug) in which a physician pays (or is sponsored) for exception from the FDA regulations to try a new drug (this is before any clinical trial). There is no treatment available for this condition. There are reports of treating knockout mice with replacement nucleosides that have increased their life span from 14 to 34 days. Heart wrenching and tragic it is, I don't think the NHS should be paying for this.

[jako1]

That makes me feel happy. What an achievement. Good luck little man

[Jonmx]

Sad news.
http://www.msn.com/en-gb/news/uknews/judge-rules-a...