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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

306 replies

SnappedCrackledAndPopped · 27/06/2018 19:48

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.

OP posts:
FierceDragonMother · 27/06/2018 20:01

Their child is going to die.

Have a fucking heart!

TwoBlueShoes · 27/06/2018 20:02

I'd donate but maybe have a word with the school afterwards about choosing charities carefully in the future and how you'd prefer they stick to registered charities.

WerkSupp · 27/06/2018 20:05

You have no idea if the therapies are quack. And contrary to what you believe, the NHS does not pay for a great deal of proven treatments for terminally ill children, especially for neuroblastoma.

YABVU.

Catzpyjamas · 27/06/2018 20:05

Having recently witnessed and contributed to similar (with the same concerns as your OP) I'd say that if you can afford it then support it. The potential treatment may well be useless and the amount needed unachievable but your DCs will be happy they've contributed and the recipient family will appreciate ANY support when they're facing such a dreadful situation.

Birdsgottafly · 27/06/2018 20:05

Usually if the treatment isn't followed through, the excess money is given to the Hospice, or in my Friends case, the treatment worked and the excess was given to the Hospice her child would have died in.

That's a good cause.

I'd personally be happy to give towards a child's last holiday.

I know how you feel, in some way, I'm opposed to balloon send offs.

Don't embarrass your children by making this stand, just give the minimum and as said, be happy it isn't your child dying.

Morgan12 · 27/06/2018 20:05

Wow. Just wow.

Sailinghappy · 27/06/2018 20:06

Just give a few pounds/ cakes or whatever is requested and be grateful that's all you have to think about in this terrible situation. Perhaps the important thing here is not to judge others, especially those in genuine turmoil. I would suggest you leave the parents to make their own decisions about their child's treatment without judgement.

StealthPolarBear · 27/06/2018 20:06

I do agree with the consensus that the best thing is to go along with it but I also feel uneasy at the message it's giving children - that th e nhs doesn't fund effective life saving treatments for children. It does.

WhatWouldLeslieKnopeDo · 27/06/2018 20:07

I understand your position, but I think you should let your children participate. Other children (and parents) won't necessarily understand and might be quite nasty about it.

No good will come of saying anything to anyone. The child's medical team will have already weighed in on this treatment and either they've said it is safe/might be beneficial or the parents are ignoring their opinion.

Often in these situations the patient never gets the proposed treatment anyway as they are too unwell to travel or the quack decides they're not eligible or whatever.

What a terribly sad situation all round. Hopefully the little girl will remain comfortable and be able to enjoy her Disney trip.

StealthPolarBear · 27/06/2018 20:07

That wasn't in response to you week, cross post

Birdsgottafly · 27/06/2018 20:08

"I'd donate but maybe have a word with the school afterwards about choosing charities carefully in the future and how you'd prefer they stick to registered charities."

Hopefully she'll be told to fuck off, in a professional manner.

Where does that leave the fund raising when a child is killed, they aren't registered charities.

Local fundraising can often be the most effective.

37KAT · 27/06/2018 20:08

Whilst I agree that alternative treatments may not work and that you do not agree with what they are trying to achieve, I think you are being heartless even considering not allowing your children to participate and contribute to the cause because it gives family hope, and the chance to make life long memories at Disney land.
A situation like this is not one to take the moral high ground. If this was your child you may consider anything to prolong life. Be thankful it isn't your child, and give your children some cash to participate.
Our family friends DC died of cancer aged 9, if you'd been through a horrific journey like this you wouldn't quibble over a few quid....

Original poster
SnappedCrackledAndPopped · 27/06/2018 20:08

School is 'suggesting' £2 each for the non uniform donation, plus probably another £1.50 or so each for cakes, so could be about £15 in all.

Fatty of course I'm thankful my family isn't in this position. What a ridiculous thing to say! I have close friends who have been through something very similar, but they approached things in a very different, more palliative centred way. Obviously I'm not going to discuss it with them.

I'm just very uncomfortable with helping to fund dodgy, invasive 'therapies' in questionable clinics with no gain. There have been very few actual clinical trials in this area.

I probably will end up just giving them the money and letting them get on with it.

OP posts:
AsAProfessionalFekko · 27/06/2018 20:09

If the children are doing enough I would try to make sure that they aren't 100% banking on this being a cure. They will be absolutely devastated if the worst comes to the worst.

MrsMaisel · 27/06/2018 20:09

Do they actually have a treatment in mind, or is it just money for whatever therapy they can spend the money on? I would add, 'and do their doctors endorse it?', but remembering Asha King and his poor parents' efforts to get proton beam radiation for him, I don't think that's much of an indicator...

Carriemac · 27/06/2018 20:09

I completely agree with you. happy to donate to research or hospice charities but crowdfunding treatment is actually IMHO pointless and unethical

Purplejay · 27/06/2018 20:10

Make a cake and pay the money. Be thankful it isn’t your child. You are also not really in a position to judge whether the treatments could work or not.

Skydiving · 27/06/2018 20:10

Yes I’d “give the money and let them get on with it”.
Not at all judgemental. Their child is dying for goodness sake.

Pilcanpissoff · 27/06/2018 20:11

Wow OP,

As another who is in the same position as this girls family, I find your opinion quite upsetting, I’m sure if you were unfortunate enough to be in our position, you would try anything and everything to help your child through treatments and explore everything available, no matter how unconventional it is.

Let your kids take part, and hope that you never ever find yourself in my shoes.

Jonbb · 27/06/2018 20:13

OP, I totally agree with you, not in the best interests of the child and I would struggle with this too. Inappropriate for the school to support this.

Myotherusernameisbest · 27/06/2018 20:13

I'd donate. It's giving them hope.their child is going to die and as parents they probably want to know they did everything they possibly could think of to help or prolong their child's life.

MrsMaisel · 27/06/2018 20:13

Yes Pilcanpissoff, I have been there too - and it's confronting when you realise how quickly other people can write your child off, and expect you to do the same.

RideOn · 27/06/2018 20:14

Although I think I would feel the same as you about taking a terminally ill child abroad for untested treatments, at the same time, they are her parents and I think they are the ones to decide what is in her best interest. If she is older maybe she wants to keep some hope. Maybe the alternative treatments are not curative but symptom relief.

I think this is a bit different to an ethical objection, its a difference in opinion. I'd just be thankful you don't have to make the decisions these parents do. Give a couple of pounds.

I think it is amazing that people who have had someone die, raise money to try to prevent the same thing for others, but if I had a terminally ill child in front of me (who lets face it, research is going to be too late for) then maybe I'd want to get her to Disney more.

Armchairanarchist · 27/06/2018 20:14

Just be grateful it isn't you and let your children take part.

Bibesia · 27/06/2018 20:14

On the one hand it's a little money and probably no skin off your nose. On the other hand it's putting rather a lot of money into the hands of quack therapists who exploit desperate families, and subjecting the child to therapies that may be actively harmful - and by giving them more money, it enables them to harm even more children. As a minimum, it's dragging a very sick child off on a long and exhausting journey for no benefit to her. OK, it gives the family hope, but isn't the child the important person here?

I think I would be with you, OP, but I agree it's difficult to say no to your children if they want to "help".