to not contribute to this appeal and potentially embarrass my children?

[SnappedCrackledAndPopped]

School is holding a cake sale and non uniform day for a 'charity appeal' for a terminally ill little girl. The appeal has been featured in local newspaper and radio and they want to raise half a million pounds to go towards seeking alternative therapies abroad and also a memory making Disney family holiday. I'm rather embarrassed to say that I have a few issues with this, due to the following:

The child is terminally ill. There is nothing, absolutely nothing that can be done to save their life or halt progression of this cruel and tragic disease. At best, these quack unproven treatments could only extend their life by a couple of months, at worse it would mean dragging a very sick child half way around the world on several exhausting journeys, which I'm not too sure would be in their best interests.

It is not correct to say this is a charity appeal. It is a crowd funder.

The kids think I'm being unreasonable. I'm ok with donating to one of the charities and foundations that fund research into this disease and I will happily do so. It's just that the crowd funder doesn't sit comfortably with me.

On the other hand I can wholly sympathise with her desperate family and have no idea whether or not I'd do the same in this situation.

Should I just keep my thoughts to myself and ride the wave of love shown to them by our local community, or go with my gut instinct that all this is probably not a very good idea?

Prepared to be told I'm a heartless evil witch.

I'm not a scientist but am from a medical/scientific background and perhaps my attitude had been shaped by growing up hearing my own family's blunt and matter of fact conversations

There’s an inevitable plate glass window between those in a position to think hyper rationally and those who are suffering too much to even want to be rational about things, which is quite understandable. And inevitable.

But I don’t think you’ve expressed yourself insensitively, given the difficult subject matter. Please don’t beat yourself up.

I'm really struggling to understand how you could have written that op without realising you would upset the families who had been through this. I think you need to spend some time reflecting on your character. It's particularly galling that you have tried to convince your children to be less kind than they are.

I’d also feel uneasy. I’d give anyway as it’s only a couple of quid and not something I’d feel good about making a public stand over.

However, I’m a journalist on a local paper. We have literally dozens of people running these crowdfunding pages come to us to ask us to publicise their endeavours every month. I’m heavily cynical, especially the ones that seem to have no specific aim, are very vague about what the money is going to and can’t say what will happen to the money if it’s not spent on the specific cause. I’ve seen the money disappear too many times down a rabbit hole.

So we don’t do stories unless there are overwhelming and compelling reasons. If there aren’t, then I ask them to look at the wording on their page and the transparency surrounding their campaign and then come back to me.

I’m actually fine with the idea of crowdfunding and if a family wants to raise money to take their dying child to Disney then that’s legitimate as far as I’m concerned, as long as they’re upfront about it. It’s when they’re not truthful about it that it undermines the whole crowdfunding scheme.

We had one where a parent fundraised for their dying child, the child didn’t die (and I suspect wasn’t ever going to) and instead of donating the cash to a charity set up to support children with this condition, they block paved their driveway.

I can completely understand being uncomfortable helping to fund alternative treatments however I wouldn’t make my kids be the odd ones out over this, I’d just pay the money and consider it a contribution towards a family holiday for a dying child.

I would also let the school know that you felt uncomfortable being pressured to donate towards alternative therapies and could they stick to registered charities from now on.

For the record I have lost my child but maintained the power of rational thought, thank you battleaxe.

Would you be making a stand by not donating though? Would it actually be noticeable if you just didn't cough up any cash or baking?

I never contributed for non-uniform days (as I think they're unethical) but my children weren't aware and neither were any other parents. And I helped run many bake sales but I never one where every parent brought a cake nor where every child bought one. I'd have no idea which individual parents or children didn't participate.

I can understand not wanting to donate to a cause where you worry the money is actually funding clinics taking money from desperate parents.

Yes, precisely. There seems to be an assumption from some posters that the proposed treatment isn't at the hands of some filthy evil charlatan that preys on the desperate. With no basis.

This is all so reminiscent of Charlie Gard and co.

Completely different reactions according to background etc,

Agree, I wonder how many would have been comfortable with their children's school donating to the Charlie Gard or Alfie Evans appeals?

Well I’m from a scientific background OP and I work with patients everyday.
I seriously would never dream to judge anyone who is trying their hardest to get a bit more time with their child.
It has nothing to do with science

fwiw about 50% of medical studies can’t be reproduced so are actually of no value at all. And less than 20% of treatments on the nhs have actually been proven to work. Most are well maybe yes, maybe no type..
This also basically mean that when you look at an ‘unconventional treatment’ you can't tell if

• it might be just as good at what the nhs offers (which isn’t always great...)
• if the reason fo the lack of evidence is because it’s too new
• if actually it’s no good at all (like a bit less than 20% of nhs treatments that are known to be detrimental ....)

Lost of said unconventional treatments are then becoming mainstream (see the proton beam therapy used for brain tumour that were deemed so bad that they thought it was ok to issue a warrant to find a child whose parehtbwnted to use said therapy. We have one now. Because actually it wasn’t so bad after all...)

So please don’t use the ‘scientific argument’ to explain what is basically a total lack of compassion and understanding of what it means to see your child dying.

Werk i know the family of that little girl (now young lady) the amount of people who donated held events around our county was amazing.

Im so glad she was giving a second chance for her and her family and it only happened due to community spirit.

There was another little girl from the village im from she was 3 at the time and needed a bone marrow transplant not long after the 11 year old. Again the community came together and now theres probably thousands more on anthony nolans books willing to help others. That little girl is ok now as far as im aware.

Communitys should come together when these things happen.

zivashighkick sorry. Just trying to be as understanding as possible to the “you’d try literally anything” crowd. I actually didn’t mean to phrase it to include everyone battling terminal illness. I’ll shut up now.

Is it that quack at the Burzinski Clinic?

I’d feel the same to be honest. I don’t want to line the pockets of a quack who seeks to profit off child cancer and misery.

I agree with @BananaToffo. I understand your concerns but this is not the best forum to air them. I would see it as a gesture to support a family during an unimaginably difficult time. (And I think some pp have been very harsh in assuming you have no sympathy or are judging the family. I don't get that from your posts)

I also think I would approach the school perhaps at a later date to talk about only giving to registered charities.

I disagree with the PP who suggested that this is a bad idea because it stops money going to certain causes. Perhaps crowd funding is easier to organise than registering a charity but that's rather the point. the procedures are there to protect everyone

There were several heartbreaking stories after the Manchester bomb about well meaning people who had raised money but didn't understand enough about how the system worked and had got into difficulties. BBC article here: www.bbc.co.uk/news/uk-40198272

If people choose to give to crowd funding causes out of their own pocket, fair enough but IMO schools/business etc should stick to official channels

It's not up to you to decide what is best for the poor little girl.

I wonder how many would have been comfortable with their children's school donating to the Charlie Gard or Alfie Evans appeals?

And you will know that how??
What is telling you that this case is similar? And it’s not actually similar to the case of the young child with brain tumour who went from treatment in Prague (forgot his name sorry), is now doing really well despite doctors and judges issuing an arrest warrant for him??

Thank you Battleax, being assumed to be hysterical is a sensitive spot for bereaved mothers.

@BrexitWife

So doctors can issue arrest warrants now?!

Do you remember when radiotherapy was considered a quack therapy and it was not worth funding?

As long as it is not alternative healing aka crystal bollocks most radical treatments start off as "alternative therapy" aka the NHS will not fund experimental treatments or treatments they deem not cost effective aka if a treatment would 95% heal someone but was fatal without treatment but cost 5 million pounds they would put them on palliative care.

The NHS does cost benefit ratio's even if the treatment will have a great chance of success of completely curing a person not simply extending life by a few months they will not fund it if it does not fall within the cost benefit ratio (which steady reduces year on year).

At best, these quack unproven treatments could only extend their life by a couple of months
...Er, so the small possibility of giving this child a couple of months more to live is a waste of a tenner? Tbh even if you don't support the cause, your kids will be embarrassed not to join in and the other kids will notice and comment. Is it at least worth a tenner to save your own kids some embarrassment?

Memories for who? Poor child

OP just give the money! The chances of this alternative treatment working is slim to none and I'm sure her parents have weighed out the pros and cons of it and they have come to decision to try so should be supported in this endeavour to save their little girl just the same if they had chosen to let her pass on peacefully. Personally even if it's just to take her Disney world, she doesn't have long left at least her last months should be her happiest and you can donate more money to a charity that researches the illness in your own time.

Agree with you OP. Schools almost have yr arm behind yr back to give. Usually it's £1 per child for non uniform. If u have a few dcs and it's a few times a term it all adds up.
So therefore I'd prefer to choose the charity of my choice. Agree with all that u said about the money could be more useful elsewhere. BUT you hsve seen the harsh responses on here and if you say anything at school you will get the same backlash. Probably if truth be known there will be lots of other parents that feel the same as you but won't admit it for fear of retribution. The parents if the child prob didn't have any say in the fund raising someone else prob started it. Your dcs prob won't understand it either. I'd probably just pay up and let it go to keep the peace.

Don't embarrass your DC, OP, you'll have to cough up. A Disney holiday isn't such a bad thing in the circs.

Encouraging DCs to question and think in the way you are doing about mob rule and bad medicine is worth more than any amount of cash - well done.

Agree, I wonder how many would have been comfortable with their children's school donating to the Charlie Gard or Alfie Evans appeals?
Honestly, I feel quite uncomfortable with a lot of the mass appeal for sick children things to try experimental treatment or ignore medical advice to line the pockets of people who (in my opinion) seem to make grand promises to vulnerable parents who are in harrowingly awful situations.

I don't like mob justice or the belief tjat sharing things on facebook is equal to medical knowledge.

I'd happily chip in to help give a child something in their final months and support the parents. I feel very uncomfortable with the emotive pleas and would never donate to crowd funding treatments that may well subject to subject the child to more suffering than well managed palliative care.

I'm not a bad person. I just have a line in the sand (like most people).

I agree with you OP. There are much better ways this money could be spent. But I wouldn't want my kids to stand out so would give them the minimum they need.