Charlie Gard 8

[cjt110]

New thread so that we can await this afternoon's hearing at 1400 (UK time)

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Just looking at the fundraiser and Charlie's fight webpage.

I notice that this is what they are looking for-

"After endlessly researching and speaking to Dr's all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn't been tried on anyone with his gene before (he's only number 16 in the world ever reported) but it's had success with another mitochondrial depletion syndrome called TK2 which is similar"

I think the TK2 type is just associated with muscle, whereas the type charlie has is to do with the brain though.

There is a lot of info about the different types on Wikipedia. It seems the TK2 type is quite different from the kind Charlie has.

Myopathic form

The TK2 related myopathic form results in muscle weakness rapidly progresses leading to respiratory failure and death within a few years of onset. The most common cause of death is pulmonary infection. Only a few patients have survived to late childhood and adolescence.[8]

Encephalomyopathic form

SUCLA2 and RRM2B related forms result in deformities to the brain.[8] A 2007 study based on 12 cases from the Faroe Islands (where there is a relatively high incidence due to a founder effect) suggested that the outcome is often poor with early lethality.[13] More recent studies (2015) with 50 SUCLA2-mtDNA DS patients with range of 16 different mutations show a high variability in outcomes with a number of patients surviving into adulthood (median survival was 20 years. There is significant evidence (p = 0.020) that SUCLA2 patients with missense mutations have longer survival rates. This could support the hypothesis that some missense mutations are associated with some residual enzyme activity - this should be interpreted cautiously given the small number of patients and the lack of direct experimental evidence of residual activity.[2]

RRM2B mutations have been reported in 16 infants with severe encephalomyopathic MDS that is associated with early-onset (neonatal or infantile), multi-organ presentation, and mortality during infancy

Link here is anyone s interested in reading more. it helped me understand the different types.

en.wikipedia.org/wiki/Mitochondrial_DNA_depletion_syndrome

Myopathic= Myopathy is a disease of the muscles in which the muscle fibers do not function properly. This results in muscular weakness. "Myopathy" simply means muscle disease.

Encephalopathy= a disease in which the functioning of the brain is affected by some agent or condition (such as viral infection or toxins in the blood).

Was it not explained to the parents these are too quite different types? He has been diagnosed through genetic testing with the type affecting the brain.

thanks cjt :)

7. GOSH holds and is bound by different principles. A world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH treats its child patients. 
 Point 7 from the GOSH statement. Just because we had a child, doesn't always make us equipped to make the right decision for THEM.

two, sorry.

just to say i got a lovly pm reply from Gosh shed a little tear they wer so gratful for support so any messags to them will be very much apprciated

Total ignoramus but is there any reason why Charlie can't have a tracheostomy instead of oral intubation? I thought it was meant to be more comfortable.

Sostenueto, you quiet??? lmao

JustHangingAround, I would send them anyway, they probably need a moral boost.

I haven't read the other threads but have just read this one. The whole situation is awful and I'm not even sure what id do in Charlie's parents position. I do feel horribly sorry for them and Charlie obviously. I keep hearing that he has a 1 in 10 chance and I do think that as a parent I'd want to give my child any chance I could. What i don't understand is what Is the chance, a chance of full recovery or just survival? I can understand his parents fighting this battle if Charlie has any chance of a decent quality of life if he gets the treatment but I'm not sure id feel exactly the same if it was just going to prolong his life but not improve it.

I cannot imagine what they are going through and I am so so sad for everyone involved including everyone involved at GOSH. It must be incredibly difficult for them too.

Sorry just went to grab some lunch. No further tweets on Sky.

Can I just say how lovely it's been to follow a topic with such an emotive nature, where the discussion has been very mature and productive. And lets keep it that way :)

I've just finished reading GOSH's statement. I'm in bits poor poor baby. I know the parents are going through hell, but it must be bloody heartbreaking being the health care professionals caring for him throughout all of this too

Long term ventilated patients usually do end up with a tracheostomy, usually. However you're sort of stuck if you trachy a patient who isn't going to live as essentially you can ventilate them forever through it. It's not always appropriate.

phoenixtherabbit,he is not going to have a quality of life though, there willnot be that much of a change and you cant reverse brain damage, or sight or being deaf.

I realise it's quite difficult to explain, what I just wrote.

Nobody has actually been able to state where the 1 in 10 statistic came from let alone what it actually means. It seems that it is another staristic which has been jumped upon by CA and co to stir things up.

I think on the fundraiser more should have been said about Charlie's type on mito rather than the treatment has helped others with a different form. Quite misleading really.

phoenixtherabbit: it's a (probably highly optimistic) 1 in 10 chance of some (how much? nobody knows) but less life support being required to keep him alive while waiting for his accumulating problems to lead him dying.

cjt110, did you see my post to you on the previous thread?

I'm another who is tending to read these threads for the reasonable, balanced, discussion rather than looking at other sources online.

Throughout the whole case I have been both sympathetic with Charlie's parents & their very natural need to fight for whatever treatment could help their little boy - and Charlie's own need for dignity & respect for his own best interests (even when that means letting him go).

I wouldn't want to be in Chris & Connie's position for all the tea in china but, if I was, I truly hope I'd be able to find the strength to let the suffering end.

I did read a thread somewhere else where a supporter of CA was calling a rational poster a "fucking idiot" for suggesting a baby should be given dignity. Because Charlie "wouldn't even understand the word" .

You can't converse with crazy.

I thought it was 50% chance it could go through the blood/brain barrier (treatment) Now, some places seem to be reporting this figure as chance of success

I had heard this morning that an American doctor had said they could reverse the brain damage and I did think, What? Surely that is not possible. I did not actually know that Charlie is deaf or had vision issues.

I feel incredibly torn thinking about it. My head says it may be kinder to let him go (although I do think that should be allowed to happen in his home if that is what his parents want) but my heart says there's a chance why wouldn't you take it.

.

What do you all think may happen after today? Think is any chance they may give the treatment at GOSH under this new doc and not moving Charlie, for 3 months to see? In that case perhaps the money raised should go to GOSH...

I think it is more likely the original decision will be confirmed.

nauticant when you put it like that it does makes me think it would be kinder to let him go but I still have the little niggle of what if it worked and he did have a quality of life but I understand you cannot make serious decisions based on what ifs