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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

AIBU to think that thousands of people loving charlie and bradley is some what false.

999 replies

Lonelymummyof1 · 01/07/2017 07:29

I know exactly what It is like to have a poorly child same as hundreds more parents in the uk.
Set aside my belief that I believe that bradley has very little dignity and both him and charlie are now used as some weird sort of click bait.

The supporters I do not understand it ?

We love you, we are heart broken and we will miss you.

Now I get empathy but this is not empathy this is media posts just gone crazy to write the most heart breaking post they can.
I wish neither of these children would have to lose their life and can undetstand the parents pain just like the rest of the terminally ill children in this country.

You can feel sad that these things happen but this just seems weird and could not imagine allowing a nation of people watching my child pass away.

I mean how many of them 2 years from now will wake up on the morning of their anniversary and automatically remember them ?

OP posts:
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Original poster
Lonelymummyof1 · 04/07/2017 16:19

Stu
Tpn is not too bad my DD has been on TPN now 2 and half years.
It has a much longer life span now :) x

OP posts:
TalkinPeece · 04/07/2017 16:27

This thread has gone properly good and fluffy now.

Two parents who really understand the issues are able to support each other and inform us at the same time.

MN at its very, very best.

NorthernLurker · 04/07/2017 16:28

Phone cases?????

FFS

MommaGee · 04/07/2017 16:30

Flowers and Wine in abundance top all you parents going through this crap wirier bringing out you're own air freshener.

Do people realise doctors do more than just read a book? Yeah I might be qvle to recite my sons medical stuff, I might be better prepared to deal with stuff than his GP and yet I can't cut him open and fix things, I can't intubate hintif he's really poorly. I can't poke his stomach and deduce things. Yes I can read an X Ray to some degree now but I can't fit a cheat drain or calculate medicines. And even when doctors get it wrong - and they do in terms of judgemebt of disabled lives (partic neonatal lives) you would hope the convergence of opinion from the biggest courts in the land would at least drum something in to the sightseers of the Gard's grief

Puzzledandpissedoff · 04/07/2017 16:30

Can I just gently suggest that we should perhaps be careful in laying blame over the sale of the hideously distasteful merchandise? Somebody mentioned that it was on "the family's" site, but do we actually know whether the parents have chosen to involve themselves in this?

It's just that it wouldn't be the first time some ghastly chancer - family member or not - had seen their opportunity and taken it

Original poster
Lonelymummyof1 · 04/07/2017 16:32

Own air freshner 😂😂😂😂😂😂
I would find it slightly creepy if someone had my DDs face on their phone cover.

I honestly hope we do not end up in GOSH anytime soon.
I would really struggle if someone tried to "recruit me" not to lose my shit.

OP posts:
MommaGee · 04/07/2017 16:33

Yes sorry.

alpacasandwich · 04/07/2017 16:34

Puzzled the bank account on the homepage is in the name of C Yates, which is mum. The paypal address is for mum. The "about" page also has a pic of mum and dad and says "our little boy". I don't think there's much doubt it's their website.

PickAChew · 04/07/2017 16:36

Oh gosh, that merchandise really is quite crass.

Original poster
Lonelymummyof1 · 04/07/2017 16:37

I will admit I always found the " sick children competition " quote high on social media ( not related to charlie gard)

I remember a while ago someone on a group wanted to give away a new princess dress ( costume) that was too small.
Wanted to give it to a child who deserved it and was brave etc.
I was astonished at the response.
People were posting their children covered in wires just after surgery ( children no longer like that now ) and it went on for hoirs and hours of course without sounding mean a certain girl with a certain famous condition " won" the dress.
I was tagged a few times and suggested that it went to someone who maybe could not afford an opportunity otherwise own this dress sick or not.
Every little girl deserves a princess dress and just because one has had surgeries does not mean parents can not afford one.

OP posts:
Oogle · 04/07/2017 16:37

Puzzled, it clearly states on the website selling the merchandise:

"This shop was set up by Charlie's auntie Laura so that people can find all the lovely items made by Charlie's supporters in one place. Everything here is made by or sourced by the lovely people found on Charlie's Facebook group Charlie's Army. Profits from items sold are passed on to support Charlie and his family."

On the same website is Connie's bank details and paypal address. I think the family, including the parents, are fully aware of the website and merchandise for sale.

alpacasandwich · 04/07/2017 16:41

www.gofundme.com/please-help-to-save-charlies-life

I couldn't find the mum directly linking to charliesfight.org but she has linked to the gofundme page numerous times and it includes a link to that website.

Original poster
Lonelymummyof1 · 04/07/2017 16:42

It has been very open from the start that it is family and parents who accept the requests to the page and run most of it.

OP posts:
LogicalPsycho · 04/07/2017 16:47

Profits from items sold are passed on to support Charlie and his family.

Charlie is not having treatment in the US. High Court has ruled it so.
Since Charlie's parents are at war with GOSH, I'm sure there is absolutely no hope of them donating the funds raised to them.

Even if he was, by some absolute landmark monumental U-turn, allowed to go to the US, that treatment was £1.2m.

Is the £100,000 they would have to spare after treatment not enough?

MommaGee · 04/07/2017 16:49

I'm on a few perm groups etc on FB and there always someone who needs to have the poorliest child or who can still recount the week they spent in hospital 7 years ago every time someone is complaining about it being month 3 or 7 or 10. I think sometimes as parents of special kids it can become our identity so much, especially if you're there day in day out, Mommy not Sarah or Jo or Edna. Every conversation becomes about how is Baby and therefore the ability to see outside of that becomes blurred and scars your normality.

The rest of us are just bloody grateful we don't have the poorliest kids and our battles are nothonf in comparison

Puzzledandpissedoff · 04/07/2017 16:49

So even though the final court decision is made, it's now clear that Charlie's mum at least is actively making money from her little lad's situation?

I've no doubt there'll be claims that it's all going to fund "future research" for other sick children, but - while I'm genuinely sorry to say this - I find it utterly distasteful that they're thinking of such a thing at such a time

As I've mentioned before, it would be well for the family to put away their wretched phones and concentrate on Charlie in whatever time they have left with him

NerrSnerr · 04/07/2017 16:51

I have read on the fb page someone saying they've set up a standing order for a couple of pounds a month into Connie's account to continue supporting her and others should do it too. Makes you wonder how much they're making- they've said on the website that due gofundme and Paypal fees the best way is to pay directly into her account.

LogicalPsycho · 04/07/2017 16:53

This reply has been deleted

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Original poster
Lonelymummyof1 · 04/07/2017 16:54

Mommagee I find it sad when people can not let go though.
I have one friend who is always saying she knows how it feels her DD had a small hole in the heart repaired at 2 and is now 7 never spent another day in hospital and not one to ever be sick.
But she is appalled by not being allowed DLA because other heart children get it.
Constantly still posting pics of her trip to hospital 5 years ago.

OP posts:
MissHavishamsleftdaffodil · 04/07/2017 16:55

There can be immense costs to a family with a child in hospital, especially long term hospitalisation, including parents not able to work. I can see it may have been an attempt to help with this.

A colleague's child was under long term hospitalisation out of county and I remember the awful financial strain to them at a time they were utterly unable to deal with it. Multiple collections were organised for them at work to try and cushion some of it.

Puzzledandpissedoff · 04/07/2017 16:55

Can I just add, too, that I didn't intend any criticism of PPs who'd mentioned the fundraising ... I was only trying to avoid making assumptions which might not have been correct (and now, sadly, seem to be only too accurate)

TalkinPeece · 04/07/2017 16:57

As I've mentioned before, it would be well for the family to put away their wretched phones and concentrate on Charlie in whatever time they have left with him
I got slapped on the wrist by MNHQ for saying similar.

Makes you wonder how much they're making- they've said on the website that due gofundme and Paypal fees the best way is to pay directly into her account.
ethically dubious all round IMHO - does gofundme not hold the money in escrow ?

Original poster
Lonelymummyof1 · 04/07/2017 16:57

Miss havisham we were discharged 8 weeks before my DDs 2nd birthday 22 months ( lone parent ) was not entitled to.dla etc as we were in hospital too long and I find selling merchandise of my childs face just degrading.
I think the most i ever asked for was a few friends ordered me takeouts haha love deliveroo 😂

OP posts:
MommaGee · 04/07/2017 17:01

Lonely my NCT friend told me she knew just how I felt - her DC had bumped his head on the table and she'd nearly taken him to hospital. For context my DS was born blue, oscillator vent, christened at 1 day because he'd probably die, major up at 2 weeks, in hospital 13 weeks. Erm...

(He's now a moody two yo grunting at me for not letting him climb the garden furniture)

MommaGee · 04/07/2017 17:04

I do think some of the money going towards living costs is reasonable if people choose to do so - so long as they are aware that is what is for. I assume they're both put of work to be with Charlie or at least on unpaid leave. Its a bloody expensive lifestyle. But the extra 100k and more coming in seems adequate without having the face of a baby who will soon die on your phone and hanging in your car. People will buy them, emot I'll anally move on and bin them. As a mother that would break my heart!