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 hope all the armchair warriors blasting the OP for her reservations have donated £15 to the parents of every dying child in the UK (in fact, why not the whole world?).

If not, you've failed to help the family of a dying child, you monster.

Don’t be daft flying. Totally different situation.

I entirely agree with you OP. These unproven treatments can be very harmful and we should not be pushing them - donating to a research foundation would be much better.

Ok, pp, you do realise that a paltry 1p in ever £1 goes to researching childhood cancers right?

There have only been 3, yes 3, drugs developed and approved for use in childhood cancers since 1970! My own child was subjected to chemo therapies designed for use in adults, we signed up to the only trial developed for his cancer type and that took him into remission after 2 years, but he relapsed after 6, following that, the only option we had was experimentation, researching one off protocols used in other cases around the world, if we hadn’t, he would have died by now, but what it did was buy us another 6 months with my beautiful boy and the chance to help him fulfill at least some of his life goals! Research available in this country is limited at best, especially for cancers like my sons. If he hadn’t have told me that he was tired and couldn’t do it anymore, I’d have carried on helping him as long as possible!

Glad you’ve accepted yabu

I'd just ride the wave of love and be thankful I'm not in that situation.

My husband has incurable cancer. Trust me, when it’s a rare cancer the NHS isn’t so great. They are limited by cost and a desire to stick to what they know even if it won’t work. Access to many drugs is limited and if we had stuck with the NHS trust me, my husband wouldn’t currently be sitting on the central line on his way to work.

For the last 8 months he has been on treatment which the NHS won’t prescribe for his condition although it is approved for other cancers. When that treatment failed 2 months ago he moved on to another treatment which has probably never been prescribed here although it’s on trial in the US. This drug is costing us several thousand pounds a month which we are paying because we have the money. It might only extend his life by a few months but those are a few months where we can carry on with normal family life. He will at some point have to have regular chemo as given on the NHS but we’ve had the chance to delay that so please don’t judge until you’ve stood in our shoes.

tilda, he wasn’t “cured” by the NHS and nobody in the NHS even claims that. After the rumour removal the NHS gave him a 70-80% chance of survival and wanted to give him further treatment. The problem was that the NHS wanted to give him Chemo and Radiotherapy and in his particular case that involved a high chance of permanent disability. I’m not sure why even the NHS was recommending further treatment if he was “cured” as you claim.

Proton therapy didn’t have the risks involved with traditional treatment, nor was it “useless”. It just wasn’t licenced here because other countries have quicker and less unwieldy processes for licencing new drugs and treatments.

No we wouldn’t all subject our children to treatments with no medical benefit

No one can say what they would or wouldn't do if their child was terminally ill. You might think you know what you would do but unless it's actually happening then you have no clue.

We can however say that as the large majority of parents of terminally ill children don't try and take them abroad for last ditch miracle treatment, the odds are against any particular individual doing so.

Their child is going to die and you want to take the moral high ground and show your kids up for the sake of a couple of quid and a cake? Un-Fucking-Believable.

I hope to god you are never ever in a position where you are desperately searching for a glimmer of hope that something could save your terminally ill child.

It's not your place to agree or disagree with what they are doing. Stand up and denounce it if you really want to but just don't expect a round of fucking applause.

Sheesh!

I don’t know what I would do if we were those parents, none of us (who’ve never had to make those choices) do.

Judging isn’t helpful.

The main point is that schools should not put pressure on pupils to give money to unregulated crowdfunders.
A school's management team should know better - though they quite often don't: the number of bullshit, manipulative scams that schools blithely encourage pupils and their families to give cash to is alarming.

It would be a different matter if the sick kid was a pupil at the school and therefore the DC (and staff) had some genuine connection with him/her. But this is someone none of you know, who has whipped up support in the local paper (local papers are a good hunting ground for scammers, because there is no real 'journalism' involved with them any more) with a big sob story and some emotional blackmail.

It's probably quite a good life lesson for DC to discover that some people are scammers and some are deluded idiots, and that they should look into appeals for help of this kind rather than be swayed by all the self-righteous bawling of the other gullible idiots.

At least you have the decency to feel embarrassed. Go a bit further and make it shame.
This is not an opportunity for you to be all controversial, it's an opportunity for your local community to rally round and show support in any way possible to a dying child. Join in for fuck sake.
I give money to the kids' school without question towards extensions, or to fix a leaky roof, or towards leaving vouchers for staff. Why not towards a dream holiday for this girl and her family?!

i completely understand you - your donation will likely go straight in the pocket of somebody who (in most cases knowingly) makes money from desperate parents without giving anything in return, or even harms the child.
However, desperate people are not open to rational thought, and hour child will suffer, so i would send in minimal contribution.

added bit of information: i know somebody who had a terminally ill child (genetic, absolutely nothing could be done). the ammount of scammers they got contacted by who promised to heal the child was massive. thankfully they were well medically educated (husband is a medical doctor) and secure in their opinions (wife is a theologian) so didn't fall for it, but it is very very easy to make money of desperate people.

I understand and am not too fond of this rise in fund raisers however in the grand scheme of things you’re probably just going to either make some cakes or bung the kids a £1 to buy some. It’s not going to be much and the kids get cake and a bit of fun on a school day and a terminally ill kid gets to know that the community is behind her. I’d say it’s worth a £1 and a bit of cake making effort

Imagine if it was your child..would you give up hope easily? you might find you would cling to any chance that there might be something, however quackish that might save them. If it still sticks in your craw so much to help just tell yourself that your £5 is going to the Disney trip and not the quack treatment.

I agree with you OP. If your kids want to spend their pocket money on it then so be it, I'd let them do that. But it won't hurt them to see an alternative view, to help make them question, which in this case needs questioning I think.

TildaMa I assure you it was the proton beam which saved him

It absolutely wasn't, MrsMaisel. Just read the independent review of the case. Once he had had his surgery he had a very good chance of recovery with radiotherapy and chemotherapy. The advantage of proton beam is that it targets a tumour and causes less damage to surrounding tissue. However, Ashya's tumour was such that they had to use the proton beam over a wide area so it had the same effect as ordinary radiotherapy. All the parents achieved was to delay his treatment and cause unnecessary risk to him.

I would need to think very carefully before discussing my opinions IRL. That's fair enough OP but please do no stop speaking your truth. Dear me, we'll be in serious trouble if we allow this to happen. Trust yourself OP. Best wishes.

*Just because an opinion isn't popular, doesn't make it wrong. Always be true to yourself.

Depending on the age of your children, I think you are right to critically analyse this and to teach them the same. Just because something is sad does not mean that the course of action proposed is right, and part of growing up is working out what is appropriate (even if unpopular). Youare not heartless and there is genuine compassion in your reasoning.

A lot of the treatments the NHS don’t offer for terminally ill kids actually do work. Case in point there was a boy a little while ago whose parents had to go to court to get him treated in Europe for terminal brain Cancer because the NHS wanted him to die and so was telling the court the treatment was ‘unproven’ when it actually was very much proven. Parents took him anyway and he is now cured. That boy, I can’t remember his name, is the reason why the UK is getting proton beam therapy centres.

This is not an opportunity for you to be all controversial, it's an opportunity for your local community to rally round and show support in any way possible to a dying child.

But it isn't, is it, Blanche? Get off that moral high ground and look at what the money is being requested for - seeking unnamed "alternative therapies abroad" for a child who is unquestionably terminally ill. No doubt the people who contributed funds for Luna Petugine thought they were rallying round and showing support, but the sad reality is that their funds actually contributed to her being taken somewhere that made her desperately ill and shortened her life.

DuchyDuke, the case you are referring to is Ashya King's and you couldn't have the facts more wrong. He wasn't terminally ill, the NHS absolutely wanted to treat him because he was eminently curable and in fact they did so by carrying out successful and very complex brain surgery after which he had a 70-80% chance of survival. They didn't say the proton beam therapy was unproven, in fact they regularly sent patients for it when it would help them. Proton beam therapy isn't magic, it's essentially radiotherapy that is more targeted so it causes less damage to surrounding tissues: but in Ashya's case his cancer was such that proton beam therapy would have had to be over a very wide area so it would have been no different in its effects to radiotherapy.

Why is this case constantly trotted out in debates like this by people who have no idea of the facts?