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.

Pay the money and move on.

At least it’s for someone in your community and who knows how any of us would feel or do in this situation. It’s heartbreaking.

I completely understand your reservations, op. There has been some downright unpleasant emotional blackmail on this thread.

I probably would pay the bare minimum, but I would also mention to the school my concerns about the choice of fundraisers for the future. And I suspect it would trouble me, if they do take the child abroad for treatment, that I had contributed in however small a way to a terminally ill child being exposed to unnecessary distress. Particularly if it's lining the pockets of a snake oil salesman and encouraging them to perpetuate the cycle.

My son (4) had cancer.
He is better now. Thankfully.
I know a few parents who have lost their children from when we were all together on the wards that have been extremely hurt with the recent press on families looking for alternative treatment etc. I was told I was going to lose my child and whilst I had fleeting moments about overseas treatments and that you would do anything to save them we are unbelievably fortunate to have the NHS with some of the best drs and research in the world.
Also our hospital (NHS) does send children overseas for treatment that they know will / could work.
Experimental treatment for me is a huge no no, sometimes terminal is terminal and these "new" treatments are not safe and we all should have a dignified and pain free end if we can.

However I think for the sake of your "few pounds" you should just donate.
It would be mortifying for your children if their peers found out you refused to donate to a young child's final holiday.

I totally agree OP. The recent high profile cases like Charlie Gard and Alfie Evans seem to have set a dangerous precedent for parents finding quacks and sharks who will do anything for money.

Doesn't mean I wouldn't feel dreadfully sorry for the parents but lining the pockets of some unscrupulous internet Doctor and dragging a terminally ill child around the world searching for a miracle isn't something I'd be prepared to fund.

No Doctor comes to the decision that there is nothing more than can be done for someone easily.

I can see where you are coming from and as a previous poster has said there are much more cost effective ways you could donate your money to save dc's lives. This doesn't seem to be as much about that as a community supporting one of its own which also has a role in society. I would donate the money and keep my head down in rl as it is an emotive topic and you could easily get misjudged.

In terms of support to a family will bills, mortgage, etc. I would prefer yo donate to a charity that helps families that need financial support. The money will then help many more families and the need will be independently assessed.

keep your views to yourself. you are not in their position and no doubt it is being done probably by friends with the very best of intentions.
presumably if the money raised cant be used for the purpose it will be donated to a relevant cause. that happened locally here, all funds split between hospice and a cancer charity

I think there is a huge difference in Charlie gard/ Alfie Evans cases to the one op mentions. There are clinical trials and experimental treatments being done by doctors all over the world.
In my goddaughters case, great ormond street suggested a particular treatment in America 3 months prior. The government took 10 weeks to give us a decision on funding before rejecting it. It was only a pending election and the press we garnered that caused a u turn on funding. It wasn’t us fighting the doctors, it was us trying to find a way to access a suitable treatment that didn’t have expertise in the UK. There are legitimate experimental treatments, if they can be delivered timely they save lives. For every operation you’ve ever had someone died during the exploration process and thousands were saved. It’s a gamble I’d take.

purplepieceofsky

I'm curious where you draw the line with charity donations. You say you would give £15 even if it only gave a child 10 minute of joy or respite. It's lovely that you think like this but how do you deal with all the worthy causes out there. £15 could save a child's life in some countries. How do you chose?
Surely unless you were willing to give everything you own up you have to say no to some causes.

I still think it's not ok to tell people who they should give money too. Most people don't have endless '£15's to give away.

YANBU.

Fair enough if the parents want to try everything. No reason to drag other people into it. I hate forced donations.

Nothing you can do without your kids being singled out. Very thoughtless of the school to put you in this position.

Taylor No not all families in this situation donate any excess money to a charity. Once it is given you have to accept you have no control over how it is spent.

Brexitwife

What point are you trying to make exactly?

How do we tell whether one treatment is crap while another isn't?

Evidence.

What else is there?

What the fuck?! What the fuck did I just read?

Comprehension problems, Melanie?

Wasnt the Asha King case about the delivery of the treatment not the actual treatment? Having read about it I'm really uncomfortable with this accepted narrative that doctors write him off and the family had to run away to save his life.

They're not after all your life savings OP, just a gesture and small show of support at a harrowing time.

I am really shocked at some of the posts here.

The OP, let's be clear, is concerned about donating to a cause that she has (rightly or wrongly) reason to think will actively hurt the child.

It's a moral dilemma that should give anybody pause & is no reason at all for her to be attacked.

Your kids are right, you are being unreasonable. Contribute & be thankful that you have healthy kids.

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??

It won't be in the least similar to that case, Brexitwife. OP has said that this child's condition is incurable. Ashya King was eminently curable, and indeed he had gone a very long way towards that by virtue of the surgery done at Southampton Hospital. There was simply a difference of opinion about follow up treatment. The UK doctors wanted to do chemotherapy followed by radiotherapy, the parents just wanted proton beam therapy. The advantage of proton beam therapy is that it can be targeted at the tumour and causes less damage to surrounding tissues, but the nature of Ashya's tumour was such that he would have had to have extensive proton beam therapy which equated to ordinary radiotherapy.

His parents abducted him to Spain, not Prague, and there was of course no warrant for his arrest. When he ultimately got to Prague the doctors then insisted on the chemotherapy the parents had previously rejected, and they did indeed have to do very extensive proton beam therapy. All the parents achieved was to put Ashya's life at risk by delaying the treatment.

And I would rather donate money to something that can cure or significantly lengthen a child's life, rather than by a few months.

What would stick in my gullet is the possibility of funding something like the Burzinski clinic This is a clinic that purports to offer cures for children's cancers through something call antineoplaston therapy which is, frankly, a load of rubbish. I remember a Panorama programme about them a few years ago that was dreadfully sad: parents and family members talked about having devoted all their time and energy to fundraising to take a seriously ill child there, only to have her brought back in an absolutely dreadful state with her life undoubtedly shortened. There was also an interview the doctor in charge of the paediatric intensive care unit there who was in despair about the number of seriously ill children brought to them from the clinic with the same hypernatremia complications resulting from the clinic's quack treatment. It had got to the point where staff knew instantly which were the patients coming from the clinic because they all had the same problems, and they utterly despised Burzinski and his colleagues. The doctor said outright that she had never seen a Burzinski patient survive.

I really wouldn't want to contemplate the possibility of doing anything that enables quacks like this to stay in business.

I'd pay it. If nothing else it shows a family who are going through sheer hell that the people around them care and want to help.

People who think that there is a duty to help parents in this situation try anything and everything should read this report. (WARNING: it's potentially very upsetting and triggering). These parents raised over £100,000 for treatment that ended up seriously harming their child. It's utterly horrifying.

This jumped out at me Bibesia.

"And the phrase that makes my heart sink is ‘We’d never forgive ourselves if…’. Actually, it’s not about them forgiving themselves. It’s about them doing the best for their child. And the focus should be what’s happening for the individual child rather than parental emotions."

I would donate simply because charities and the NHS amazing as they are, sometimes are too slow.

When my SIL was terminally ill, she was supposed to receive funding to take her little girl to Disneyland. It took so long she was no longer able to do this.

When she lost the ability to speak she was supposed to receive something to help her, she didn't and she struggled massively to communicate.

So I would donate even if it's just for the parents to be able to get a takeaway if they feel they're beyond cooking or similar. It's not up to me to judge worthiness.

I can see exactly where the OP is coming from.

I’m of the same opinion- I’d have no problem donating to a legitimate cause, whether that was for a properly run clinical trial, a specific therapy or a family trip to Disney. As others have said, I’d just be grateful it wasn’t my family in that situation.

I’d absolutely have reservations in the situation the OP outlines- a child suffering a terminal illness with zero chance of survival and donations are being requested but no clear communication on whether funds will be used to pay for a proven but unavailable treatment or on a quack.

I don’t think OP is a cruel monster for stopping for a minute to think critically about the implications of what she’s being asked to pay for.